National Survey of Patient Activity Data
for Specialist Palliative Care Services
MDS Full Report for the year 2010-2011
About the National Council for Palliative Care
The National Council for Palliative Care (NCPC) is the umbrella charity for...
Contents
1. National Overview ...............................................................................................
Contents
Table 28: Patients with a diagnosis other than cancer in community services ........................................
Contents
List of Charts
Chart 1: Response rate for country and setting ......................................................
Contents
Chart 40: Hospital Support – age and sex of new patients ...........................................................
1. National Overview
The 2010/11 Minimum Data Set for Specialist Palliative Care Services (MDS) report is the 16th since t...
National Overview
die here, compared to 45% in their own home. 2 Currently only 12% of those accessing in-patient
units (w...
National Overview
Response rate
Responders could submit electronically by email attachment; only 2% of forms were received...
National Overview
Table 2: Response rates trend
Percentage responses
01/02
02/03
03/04
04/05
05/06
06/07
07/08
08/0...
National Overview
Summary of data by country
Table 3 shows some selected data by country. It should be recognised that the...
National Overview
Chart 3: Service management by services responding
Inpatients
Day Care
Home Care
Hospice @ Home
Combined...
National Overview
Age and gender
Data from the returns of the individual services was used in Chart 4 to compare the diffe...
National Overview
Patients aged 85 and over – trend data
Chart 5 shows the percentage of people accessing specialist palli...
National Overview
Age of people accessing palliative care
Comparing data on the breakdown of age and sex in the Minimum Da...
National Overview
Ethnicity
Palliative care services are asked to categorise their patients according to the 17 ethnic gro...
National Overview
Chart 8: Ethnicity trends
100%
90%
80%
70%
60%
Response
Rate
% Non White
50%
40%
30%
Other as a %
Of ...
National Overview
Diagnosis
Conditions other than cancer
Chart 9 shows the proportions of people with conditions other tha...
National Overview
A breakdown of diagnoses other than cancer can be seen in Chart 11.
The proportion of “Other” diagnoses ...
National Overview
Cancer diagnoses
The different types of cancer diagnoses can be seen in Chart 12. The highest rates were...
Inpatients
2. Inpatients
Key findings
•
Nearly a third of all diagnoses other than cancer were under “all other condition...
Inpatients
Chart 13: Age and sex of new inpatients
Under 16
0.0%
0.0%
16 to 18
0.0%
0.0%
19 to 24
0.2%
0.2%
25 to 64...
Inpatients
Ethnicity
Ethnicity data were collected by 94.5% of Inpatient services. More than three quarters (77%) of new
p...
Inpatients
Primary diagnosis – cancer
A primary diagnosis of cancer was recorded for 31,325 new referrals to Inpatient uni...
Inpatients
Primary diagnosis – conditions other than cancer
Excluding the patients with a ‘not known’ diagnosis, 4,024 new...
Inpatients
Table 9: Location of inpatients before admission
Location
Count
Home
28,145
Care Home
703
Acute Hospital
...
Inpatients
Location after end of stay
Just over half of those no longer being cared for by the service (55%) had died. The...
Inpatients
Bed usage
Services were asked to calculate the bed occupancy rate from a midnight count of the number of beds
a...
Inpatients
Beds analysis
Over 12 years, an analysis of services reporting on their total number of beds showed:
•
The ave...
Inpatients
National estimates
From the data supplied it is possible to make estimates of palliative care activity national...
3. Day Care
Key findings
•
The proportion of non-white patients recorded as “Other” has halved, but is still nearly a qua...
Day Care
Table 16: Day Care patients – age and sex
New
All
Female
Male
Total
Female
Male
Total
Under 16
2
2
4
...
Day Care
Chart 24: Day Care new patients – non white
Mixed White / Black Caribbean
2%
Mixed White / Black African
1%
M...
Day Care
Table 17: Diagnoses of Day Care patients with a diagnosis of cancer
Cancer site
New
All
Lip / Oral / Pharynx
...
Day Care
Primary diagnosis – conditions other than cancer
Excluding the patients with a ‘not known’ diagnosis, 2,115 new p...
Day Care
Consultations
For the three years that we have collected data on consultations, the figures have varied quite wid...
Day Care
Of these 79 organisations, follow up consultations were considerably lower for complementary therapists
and clini...
Day Care
Deaths and discharges
The number of patients who died or were discharged during the year was calculated from the ...
Day Care
Chart 28: Average (mean) caseload trend
60
50
40
30
20
10
0
Mean caseload
Day Care use
A Day Care session is de...
Community Services
4. Community Services
Key findings
•
Mean length of care for Home Care was about 123 days.
•
Mean le...
Community Services
Response
Data was sought from all the palliative care services known to be providing care in the commun...
Community Services
Age and sex
Home Care
Chart 29 shows patient demographics for Home Care services. On average, each serv...
Community Services
Hospice @ Home
Chart 30 shows patient demographics for Hospice @ Home services. On average, each servic...
Community Services
Combined Home Care & Hospice @ Home
Chart 31 shows patient demographics for combined Home Care and Hosp...
Community Services
Ethnicity
Ethnicity data were collected from 92% of community services. Nearly three quarters (74%) wer...
Community Services
Chart 33: Community Service new patients – non white
1%
1%
2%
Mixed White /
Black Caribbean
0%
Mixed...
Community Services
Primary diagnosis – cancer
Excluding patients with a ‘not known’ diagnosis:
•
89% of patients using a ...
Community Services
Table 27: Community Care diagnosis – cancer
Home Care
Hospice @ Home
Combined
New
All
New
All
Ne...
Community Services
Primary diagnosis – conditions other than cancer
Excluding patients with a ‘not known’ or ‘not recorded...
Community Services
Once again, the number of ‘All Other Conditions’ was higher than might have been expected, with over
30...
Community Services
Home Care
A total of 83 organisations providing home care supplied data on the number of consultations ...
Community Services
Table 33: Home Care contacts – telephone
Health care professional
Telephone
contacts
Max in
unit
Mea...
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
National Survey of Patient Activity Data for Specialist Palliative Care Services
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National Survey of Patient Activity Data for Specialist Palliative Care Services

National Survey of Patient Activity Data for Specialist Palliative Care Services MDS Full Report for the year 2009-2010 The 2010/11 Minimum Data Set for Specialist Palliative Care Services (MDS) report is the 16th since the original collection in 1995/6 and it is the second to report on activities since the rollout of additional investment associated with the End of Life Care Strategy in England. Launched in 2008, the Strategy announced additional investment into end of life care of £88m in 2009/10 and a further £198m in 2010/11.
Published on: Mar 3, 2016
Published in: Health & Medicine      
Source: www.slideshare.net


Transcripts - National Survey of Patient Activity Data for Specialist Palliative Care Services

  • 1. National Survey of Patient Activity Data for Specialist Palliative Care Services MDS Full Report for the year 2010-2011
  • 2. About the National Council for Palliative Care The National Council for Palliative Care (NCPC) is the umbrella charity for all those who are involved in providing, commissioning and using palliative care and hospice services in England, Wales & Northern Ireland. NCPC promotes the extension and improvement of palliative care services for all people with life threatening and life-limiting conditions and promotes palliative care in health and social care settings across all sectors to government, national and local policy makers. For further information or to subscribe to NCPC to receive publications free of charge and reduced rates at conferences visit www.ncpc.org.uk About Dying Matters Dying Matters is a broad-based and inclusive national coalition set up by the National Council for Palliative Care and is supported by the Department of Health. It aims to engage thousands of organisations across a range of sectors, generating, leading and supporting collective action to promote public awareness and debate on issues of death, dying and bereavement in England. The Dying Matters website is www.dyingmatters.org About The National End of Life Care Intelligence Network The Department of Health’s National End of Life Care Strategy, published in 2008, pledged to commission a National End of Life Care Intelligence Network (NEoLCIN). The network is tasked with collating existing data and information on end of life care for adults in England. This is with the aim of helping the NHS and its partners commission and deliver high quality end of life care, in a way that makes the most efficient use of resources and responds to the wishes of dying people and their families. NEoLCIN will play a vital role in supporting the comprehensive implementation of the Government’s End of Life Care Strategy. The NEoLCIN website is www.endoflifecare-intelligence.org.uk 2 MDS Report 2010 – 2011
  • 3. Contents 1. National Overview .................................................................................................................................... 7 2. Inpatients ............................................................................................................................................... 21 3. Day Care................................................................................................................................................ 31 4. Community Services .............................................................................................................................. 40 5. Hospital Support .................................................................................................................................... 62 6. Bereavement Support ............................................................................................................................ 69 7. Outpatients ............................................................................................................................................ 73 8. Motor Neurone Disease ......................................................................................................................... 81 9. Glossary................................................................................................................................................. 84 10. Acknowledgements ............................................................................................................................. 85 Appendix A – About the Minimum Data Set ............................................................................................... 86 List of Tables Table 1: Response rate ................................................................................................................................ 9 Table 2: Response rates trend ................................................................................................................... 10 Table 3: Data for the different countries 2010/11 ....................................................................................... 11 Table 4: Service management by units responding .................................................................................... 11 Table 5: Service management by new patient numbers ............................................................................. 12 Table 6: Ethnicity trend data ...................................................................................................................... 16 Table 7: Interventions in Day Care.............................................................................................................. 20 Table 8: Age and sex of inpatients ............................................................................................................. 22 Table 9: Location of inpatients before admission ....................................................................................... 26 Table 10: Length of stay by size of unit ...................................................................................................... 26 Table 11: Comparison of average length of stay between NHS and independent units .............................. 26 Table 12: Location after end of stay ........................................................................................................... 27 Table 13: Inpatients – Bed usage ............................................................................................................... 28 Table 14: Bed usage analysis .................................................................................................................... 29 Table 15: National estimates – Inpatient units ............................................................................................ 30 Table 16: Day Care patients – age and sex ................................................................................................ 32 Table 17: Diagnoses of Day Care patients with a diagnosis of cancer ........................................................ 34 Table 18: Diagnoses of Day Care patients with a primary diagnosis other than cancer .............................. 35 Table 19: Consultations – face to face ....................................................................................................... 36 Table 20: Consultations – telephone .......................................................................................................... 37 Table 21: Patient care ................................................................................................................................ 38 Table 22: Day Care places ......................................................................................................................... 39 Table 23: Community Services – responses .............................................................................................. 41 Table 24: Age and sex for Home Care patients .......................................................................................... 42 Table 25: Age and sex for Hospice @ Home patients ................................................................................ 43 Table 26: Age and sex for combined Home Care & Hospice @ Home patients .......................................... 44 Table 27: Community Care diagnosis – cancer .......................................................................................... 48
  • 4. Contents Table 28: Patients with a diagnosis other than cancer in community services .............................................49 Table 29: Community Services diagnosis – conditions other than cancer ...................................................50 Table 30: Community Services visits ...........................................................................................................50 Table 31: Response rates to contacts ........................................................................................................50 Table 32: Home Care contacts – face to face .............................................................................................51 Table 33: Home Care contacts – telephone ................................................................................................52 Table 34: Hospice @ Home contacts – face to face ....................................................................................53 Table 35: Hospice @ Home contacts – telephone.......................................................................................54 Table 36: Combined Home Care and Hospice @ Home service contacts – face to face .............................55 Table 37: Combined Home Care and Hospice @ Home service contacts – telephone................................56 Table 38: Deaths and discharges for Community Services .........................................................................57 Table 39: Community Services – place of death .........................................................................................58 Table 40: Community Services – average length of care .............................................................................59 Table 41: Community Services – length of care ..........................................................................................60 Table 42: Caseloads for Community Services .............................................................................................61 Table 43: Age and sex of patients receiving Hospital Support.....................................................................63 Table 44: Patients with cancer diagnosis in Hospital Support .....................................................................65 Table 45: Patients with a diagnosis other than cancer in Hospital Support .................................................66 Table 46: Contacts per patient in Hospital Support .....................................................................................67 Table 47: Face to face contacts with patients in Hospital Support ..............................................................67 Table 48: Telephone contacts with patients in Hospital Support .................................................................68 Table 49: Length of care for Hospital Support ............................................................................................68 Table 50: Face to face contacts in Bereavement Support ...........................................................................69 Table 51: Telephone contacts in Bereavement Support ..............................................................................69 Table 52: Contacts in Bereavement Support ..............................................................................................69 Table 53: Age and sex for clients in Bereavement Support .........................................................................70 Table 54: Bereavement Support – primary diagnosis of deceased ..............................................................72 Table 55: Age and sex of Outpatients .........................................................................................................74 Table 56: Cancer diagnoses in outpatients .................................................................................................76 Table 57: Diagnoses other than cancer in outpatients.................................................................................77 Table 58: Outpatient clinics .........................................................................................................................78 Table 59: Face to face contacts with outpatients ........................................................................................79 Table 60: Telephone contacts with outpatients ...........................................................................................80 4 MDS Report 2010 – 2011
  • 5. Contents List of Charts Chart 1: Response rate for country and setting ............................................................................................ 9 Chart 2: Response rates trend ................................................................................................................... 10 Chart 3: Service management by services responding ............................................................................... 12 Chart 4: Breakdown of age by setting and sex .......................................................................................... 13 Chart 5: Percentage of patients aged 85 and over ..................................................................................... 14 Chart 6: Comparison of age of people accessing palliative care with recorded deaths .............................. 15 Chart 7: Percentage of units returning ethnicity data for new patients ........................................................ 16 Chart 8: Ethnicity trends............................................................................................................................. 17 Chart 9: Proportions of cancer and conditions other than cancer, by setting ............................................. 18 Chart 10: Growth in non-cancer diagnosis ................................................................................................. 18 Chart 11: Breakdown of diagnoses other than cancer, by setting .............................................................. 19 Chart 12: Breakdown of cancer diagnoses by setting ................................................................................ 20 Chart 13: Age and sex of new inpatients.................................................................................................... 22 Chart 14: Ethnicity – new inpatients ........................................................................................................... 23 Chart 15: Distribution of “non-white” categories......................................................................................... 23 Chart 16: Diagnoses of new inpatients with a primary diagnosis of cancer ................................................ 24 Chart 17: Diagnoses of new inpatients with a primary diagnosis other than cancer ................................... 25 Chart 18: Location of inpatients before admission ..................................................................................... 25 Chart 19: Length of stay by size of unit ...................................................................................................... 26 Chart 20: Location after end of stay ........................................................................................................... 27 Chart 21: Bed usage analysis .................................................................................................................... 29 Chart 22: Day Care new patients – age and sex ........................................................................................ 31 Chart 23: Day Care new patients – ethnicity .............................................................................................. 32 Chart 24: Day Care new patients – non white ............................................................................................ 33 Chart 25: Diagnoses of new Day Care patients with a primary diagnosis of cancer.................................... 33 Chart 26: Diagnoses of new Day Care patients with a primary diagnosis other than cancer....................... 35 Chart 27: Length of care for Day Care services .......................................................................................... 38 Chart 28: Average (mean) caseload trend .................................................................................................. 39 Chart 29: Home Care new patients - age and sex ..................................................................................... 42 Chart 30: Hospice @ Home new patients - age and sex ............................................................................ 43 Chart 31: Combined Service new patients - age and sex .......................................................................... 44 Chart 32: Community Service new patients – ethnicity ............................................................................... 45 Chart 33: Community Service new patients – non white ............................................................................ 46 Chart 34: Community Service diagnosis – cancer ...................................................................................... 47 Chart 35: Community services – patients with a diagnosis other than cancer ............................................ 49 Chart 36: Community Services – place of death ........................................................................................ 57 Chart 37: Place of death – 2001 to 2011 ................................................................................................... 58 Chart 38: Change in number of deaths from 2008/09 to 2009/10 ............................................................. 59 Chart 39: Community Services – length of care ......................................................................................... 60 MDS Report 2010 – 2011 5
  • 6. Contents Chart 40: Hospital Support – age and sex of new patients .........................................................................62 Chart 41: Hospital Support – ethnicity ........................................................................................................63 Chart 42: Hospital Support – non-white ......................................................................................................64 Chart 43: New patients with cancer diagnosis in Hospital Support .............................................................65 Chart 44: New patients with a diagnosis other than cancer in Hospital Support .........................................66 Chart 45: Age and sex for new clients in Bereavement Support .................................................................70 Chart 46: Bereavement Support new patients – ethnicity............................................................................71 Chart 47: Bereavement Support new patients – non-white .........................................................................71 Chart 48: Bereavement Support new clients – primary diagnosis of deceased ...........................................72 Chart 49: Age and sex of new outpatients ..................................................................................................73 Chart 50: Ethnicity of new outpatients ........................................................................................................74 Chart 51: Distribution of “non-white” categories in outpatients ...................................................................75 Chart 52: Cancer diagnoses in new outpatients..........................................................................................76 Chart 53: Diagnoses other than cancer in outpatients ................................................................................77 Chart 54: Motor neurone disease in inpatients ............................................................................................81 Chart 55: Motor neurone disease in Day Care ............................................................................................82 Chart 56: Motor neurone disease in community care ..................................................................................82 Chart 57: Motor neurone disease in Hospital Support.................................................................................83 Chart 58: Motor neurone disease in outpatients .........................................................................................83 6 MDS Report 2010 – 2011
  • 7. 1. National Overview The 2010/11 Minimum Data Set for Specialist Palliative Care Services (MDS) report is the 16th since the original collection in 1995/6 and it is the second to report on activities since the rollout of additional investment associated with the End of Life Care Strategy in England. Launched in 2008, the Strategy announced additional investment into end of life care of £88m in 2009/10 and a further £198m in 2010/11. Key findings More people with conditions other than cancer are accessing specialist palliative care, but more progress is needed: • Across all settings, nearly a fifth (17%) of people using services now have a primary diagnosis other than cancer. This is compared to 5% in 2000 and 12% in 2008. Opening up services to people with a range of conditions was a key aim of the national End of Life Care Strategy, and continues to be a key goal of NCPC. This trend is therefore very encouraging, but more needs to be done to ensure that more people with conditions other than cancer can benefit from specialist palliative care services. • The numbers are highest for Outpatients where nearly one in four (24%) people have a condition other than cancer. Lowest is Home Care, where this number is only one in ten (10%). • Highest level of access is for chronic respiratory conditions, which account for around 15% of those accessing specialist palliative care with a condition other than cancer. Access is also improving for motor neurone disease, other neurological conditions and heart failure, although this varies hugely across localities. Chronic renal conditions remain low at around 5%. • The MDS currently only collects primary diagnosis, so in the case of conditions like dementia, which often co-exist alongside other conditions, people could be accessing specialist palliative care but not being recorded. It is disappointing, however, that services like day care, which could have a lot to offer people with dementia, saw only 9 people with a primary diagnosis of dementia in 2010/11. We strongly recommend that services review their own admission policies, internal monitoring and staff education programmes to ensure that people with dementia have full access. • Despite these improvements, too many conditions are appearing in the ‘Non-cancer other’ category. For example, 67% of the non-cancer contacts in Outpatients were categorised in this way, and around 30% of hospital support, home care and inpatient contacts. This is not a personcentred way of recording people using services. We urge services to feedback to us on whether the MDS forms need additional categories, or whether this data is simply not being collected locally. See page 18 for further discussion of this. The ‘oldest old’ are slowly having more contact with specialist palliative care: • • The most notable increase is amongst hospital support and community teams, a welcome development as these teams have a crucial role in preventing unnecessary hospital admissions and facilitating early discharge from hospital to the community. • From a whole population view this still represents a small proportion of people 85 and over accessing specialist palliative care. There are currently 1.4m people in this age group in the UK and just over 30,000 contacts were made with specialist palliative care services in this group (the MDS is currently unable to say how many of these contacts represent the same person using multiple services, so there will be significant double-counting). • 1 Around 14% of people accessing specialist palliative care services are 85 and over (hereafter referred to as ‘the oldest old’). This has increased from around 11% in 2000. We strongly recommend that services reflect on the proportion of the ‘oldest old’ they are reaching in their communities. This will be of increasing importance as the population continues to age. Consider that the number of people aged 90 and over in the UK is projected to more than triple by 2035, the number of people aged 95 and over to more than quadruple, and the number of centenarians to increase eightfold. 1 Meanwhile research shows that a large proportion of the oldest old would prefer to die in a hospice given the choice - 41% of people aged 75 and over prefer to National Population Projections 2010-based Statistical Bulletin; ONS 2011.
  • 8. National Overview die here, compared to 45% in their own home. 2 Currently only 12% of those accessing in-patient units (which includes both those who die there and those later discharged) are 85 and over. See page 13 for further discussion. Specialist palliative care community services help more people to die at home • The MDS shows that of those receiving community specialist palliative care who died in 2010-11, a third died at home. This compares to 20.8% nationally 3 (a figure which slowly increasing each year). It is a powerful message that where specialist palliative care is involved, the likelihood of people dying at home increases. See page 56 for further discussion. More services are recording people’s ethnicity • Almost 9 out of 10 services (87%) are recording people’s ethnicity according to the 17 ethnic groups used by the Department of Health. This has vastly improved since 2004 when just 49% recorded this information. • However, we strongly recommend that services continue to improve their recording so that fewer people are categorised as ‘non-white other’, in order to achieve a person-centred service. See page 15 for further discussion. In-patient admissions • That nearly half (45%) of the people referred to an inpatient service are discharged (42% to their home) helps dispel the myth that people only go into a hospice to die. See page 26 for further discussion. • An interesting finding is that larger inpatient units admit people for longer. In 2010/11 units with more than 15 beds kept patients for an average of one day longer than in 2009/10. Bed occupancy (the number of beds occupied as a percentage of those available) has stayed broadly the same at 75%, as has mean length of stay, at 13.5 days now compared to 13.3 in 2009/10. • We will monitor this change to see if the trend continues into future years. In the meantime we would encourage services to reflect upon Are you there? Reviewing specialist palliative care inpatient admissions criteria (NCPC, 2011) which highlights some of the ways productivity and quality of care can be improved by reviewing use of beds and admissions processes within inpatient services. See page 25 onwards for further discussion. 2 3 8 Local Preferences and Place of Death in Regions within England 2010; Barbara Gomes, Natalia Calanzani, Irene J Higginson. Mortality Statistics: Deaths registered in England and Wales (Series DR), 2010; ONS 2010. MDS Report 2010 – 2011
  • 9. National Overview Response rate Responders could submit electronically by email attachment; only 2% of forms were received on paper. The majority of forms (79%) were submitted on NCPC’s Word documents which could be imported directly into the database. This cuts down considerably on data input time, reduces input errors and leaves more time for checking and querying. 19% of forms (172) were submitted electronically in formats which could not be imported automatically, necessitating manual entry of the data. Only about half the expected number of replies had been received by the deadline (this is in line with previous years) and reminders were sent. This resulted in further submissions. An overall response rate of 70% (318 services) was achieved this year, an increase from 62% last year. Table 1 shows the overall response rate for the different parts of the questionnaire and it is seen that the response rates varied from 49% to 76%. Table 1: Response rate Number of Services Responding Service England N Ireland Wales Total Overall Response Inpatient 133 5 8 146 76% Day Care 133 4 9 146 72% Home Care 167 3 13 183 71% Hospital Support 125 9 11 145 57% Bereavement Support 125 2 7 134 49% Outpatients 144 6 8 158 50% 318 68% Overall response Chart 1 compares the response rates from England, Northern Ireland and Wales with the overall response rate. Chart 1: Response rate for country and setting 100% England 80% N Ireland Wales 60% All 40% 20% OVERALL Outpatients Bereavement Support Hospital Support Community Service Day Care Inpatients 0% Trend in response rates There is a noticeable variation in response rates across the different settings (see Table 2), as has historically been the case. We would like to understand more why some settings have a much lower response rate than others. Some of the reasons may be variations in administrative capacity and understanding of the role of MDS collection. However, within Bereavement Support, which has one of the lowest response rates, we are aware that the current data collection may not reflect the full range of bereavement care services. We are keen to work with services to identify if and how the questions might be revised so that the data is as useful as possible. MDS Report 2010 – 2011 9
  • 10. National Overview Table 2: Response rates trend Percentage responses 01/02 02/03 03/04 04/05 05/06 06/07 07/08 08/09 09/10 10/11 In-patient 77% 79% 77% 84% 87% 84% 87% 76% 79% 76% Day Care 80% 77% 76% 79% 84% 87% 83% 75% 73% 72% Home Care 59% 62% 58% 61% 65% 73% 73% 71% 69% 71% Hospital Supp 45% 49% 47% 47% 57% 61% 61% 59% 54% 57% Bereavement 56% 58% 55% 58% 63% 63% 62% 50% 47% 49% Out-patient 60% 58% 57% 55% 58% 59% 56% 51% 47% 50% Overall 66% 68% 68% 69% 75% 80% 78% 66% 62% 68% The shaded area indicates the period in which the revised MDS has been collected. Chart 2: Response rates trend 100% 90% Inpatient 80% Day Care 70% Home Care 60% 50% Hospital Support 40% Bereavement Support 30% Outpatient 20% Overall 10% 0% 2001/02 2002/3 2003/4 2004/5 2005/6 2006/7 2007/8 2008/9 2009/10 2010/11 The shaded area indicates the period in which the revised MDS has been collected. 10 MDS Report 2010 – 2011
  • 11. National Overview Summary of data by country Table 3 shows some selected data by country. It should be recognised that the data from Wales and Northern Ireland have been obtained from a very small number of services and may well not be representative of the country as a whole. Table 3: Data for the different countries 2010/11 Country 133 133 167 125 N Ireland 5 4 3 9 8 9 13 11 79% 73% 73% 57% N Ireland 83% 80% 33% 60% Wales 50% 56% 65% 58% England 9% 14% 10% 16% N Ireland 7% 10% 12% 11% Wales 6% 9% 12% 17% England 13.3 181.9 51.4 21.0 N Ireland 16.5 132.1 94.4 17.1 Wales Mean length of care in days Hospital support England Diagnosis other than cancer Community service Wales Response rate Day care England Number of services responding Inpatient care 17.4 132.6 111.9 61.0 Management Services were asked to indicate whether they were managed by the NHS or independently. Table 4 shows the breakdown of units for each setting Table 4: Service management by units responding Management Independent NHS Not Recorded Units Response Inpatients 77% 23% 0% 146 Day Care 87% 13% 0% 146 Home Care 50% 50% 0% 102 Hospice @ Home 86% 14% 0% 42 Combined 64% 36% 0% 39 Hospital Support 10% 88% 1% 145 Bereavement Support 69% 19% 12% 134 Outpatients 57% 32% 11% 158 MDS Report 2010 – 2011 11
  • 12. National Overview Chart 3: Service management by services responding Inpatients Day Care Home Care Hospice @ Home Combined Hospital Support Bereavement Support Outpatients 0% 10% 20% 30% 40% 50% Independent NHS 60% 70% 80% 90% 100% Not Recorded Table 5 breaks down the proportion of new patients attending independent and NHS services for each setting. Although the figures are largely similar to those in Table 2, which demonstrates the break down by number of units, it should be noted that overall independent units are seeing a higher proportion of new patients than they have units. This is most evident with Outpatients (57% of overall units seeing 70% of new patients) and Home Care (50% of overall units seeing 57% of new patients) units. Table 5: Service management by new patient numbers Management Independent NHS Not Recorded Response Inpatients 81% 19% 0.0% 146 Day Care 88% 12% 0.0% 146 Home Care 57% 43% 0.0% 102 Hospice @ Home 89% 11% 0.0% 42 Combined 71% 29% 0.0% 39 Hospital Support 11% 89% 0.0% 145 Bereavement Support 74% 9% 16.7% 134 Outpatients 70% 19% 11.2% 158 12 MDS Report 2010 – 2011
  • 13. National Overview Age and gender Data from the returns of the individual services was used in Chart 4 to compare the different services with regard to age and gender of patients cared for. Chart 4: Breakdown of age by setting and sex 100% 90% 13% 11% 10% 11% 17% 13% 6% 20% 16% 18% 14% 22% 7% 16% 80% 40% 70% 60% 54% 61% 60% 52% 5% 51% 4% 51% 60% 55% 50% 62% 52% 60% 50% 58% 21% 32% 40% 30% 20% 53% 33% 39% 29% 28% 32% 10% 41% 38% 26% 25% 22% M F M 29% 25% 27% 25% M F M 31% 0% F M Inpatient F M Day Care F Home Care Aged under 65 Hospice @ Home F Combined Aged 65 to 84 Hospital Support F M Bereavement F M Outpatient Aged 85 and over There were 493,242 deaths registered in England and Wales in 2010, comprising 237,916 men and 255,326 women. 4 The age, sex and ethnicity of people referred to under Bereavement Support are of the bereaved clients, rather than the deceased. Many bereavement services reported difficulties in asking clients for their date of birth and ethnicity. There has again been a slight increase in the number of clients whose details have been recorded for Bereavement Support (86% for age and 81% for ethnicity this year compared to 85% and 78% last year); this is still significantly lower than other services, as can be seen in Chart 4. We would encourage services to review how they might ensure more detailed data collection. The proportion of people aged between 65-84 who access bereavement support is higher for men than for women (32% compared to 21%) and similar to the proportion of men aged under 65 years (31%). A much higher proportion of women aged under 65 accessed bereavement support (38%). As with previous years, over half of the women using Outpatient services were under 65. This is almost certainly a reflection of the higher number of breast cancer patients seen by Outpatients. 4 Deaths registered in England and Wales in 2010, by cause, ONS Statistical Bulletin Oct 2011. MDS Report 2010 – 2011 13
  • 14. National Overview Patients aged 85 and over – trend data Chart 5 shows the percentage of people accessing specialist palliative care services since 1999-2000, who are the oldest old. Across all services, 13.8% of people accessing specialist palliative care are the oldest old, compared to 8.8% in 2000. Chart 5: Percentage of patients aged 85 and over 22% Inpatients 20% 18% Day Care 16% 14% 12% Community Care 10% 8% Hospital Support 6% 4% Outpatients 2% 0% The shaded area indicates the period in which the revised MDS has been collected. There was a particular spur from 2006, with the steepest increase amongst hospital support and community teams. Hospital support rose from 13.4% in 2005-06 to 19.7% in 2010-11. Community services rose from 11.7% in 2005-06 to 17.2% in 2010-11. This is very encouraging, given that we know that the oldest old are most likely to experience frailty, cognitive impairment and multiple conditions, leading to more falls and complications and resulting in increased hospital admissions. The oldest old are nearly 10 times more likely to have an emergency admission than people aged 20-40. 5 High-quality services in the community are absolutely essential in ensuring people can be helped to stay in the community into old age. Social care is also key, access to which NCPC continues to campaign for. 5 Trends in emergency admissions in England 2004–2009: is greater efficiency breeding inefficiency? Nuffield Trust, July 2010. 14 MDS Report 2010 – 2011
  • 15. National Overview Age of people accessing palliative care Comparing data on the breakdown of age and sex in the Minimum Data Set with data on deaths for the United Kingdom in 2010, 6 Chart 6 shows that younger people (aged 25 to 74) have a disproportionately higher access to palliative care for the number dying than the oldest old. Chart 6: Comparison of age of people accessing palliative care with recorded deaths Percentage of population who died in 2010 Percentage of population accessing palliative care in 2010-11 Under 0.6% 16 0.6% 16 to 0.2% 0.1% 0.8% 1.0% 18 0.1% 0.2% 19 to 0.7% 0.2% 24 0.4% 0.5% 25 to 36.1% 12.0% 64 27.8% 65 to 74 19.7% 24.8% 28.2% 30.3% 85 & 32.0% 14.4% Over 50.0% 12.8% 28.0% 75 to 84 19.8% 23.3% 45.9% 12.7% 40.0% 30.0% 20.0% 26.8% 10.0% Female 0.0% 10.0% Male 20.0% 30.0% 40.0% 50.0% This raises important issues about people’s needs and access to services. People aged under 75, particularly those aged 25 to 64, are more likely to receive access to specialist services than people aged 85 and over. This should be read in the context of Deaths in Older Adults in England 7 which showed that proportions of deaths from cancer decreased with increasing age (85 and over), in contrast to deaths from cardiovascular disease, ‘other’ causes and respiratory disease which increased with age. The reasons for this inequity by age may therefore be as much to do with access to services by people with conditions other than cancer, as to whether “older frailer” people need access to specialist services. However it is recommended that commissioners and providers check the age profiles of the local population against those accessing services and consider the reasons for any inequities. It should also be noted that we do not currently break down data on access to specialist palliative care within the 25 to 64 age group, but anecdotal evidence strongly suggests that access amongst younger adults (25-40 years) is much lower than middle aged people. Again this probably relates to the conditions younger adults have, which adult specialist palliative care traditionally is not geared up for. NCPC continues to work with Together for Short Lives and Help the Hospices, and more recently Marie Curie Cancer Care, on the issue of transition from children’s to adults’ palliative care services (www.ncpc.org.uk/transitions) 6 7 Death registrations by single year of age, United Kingdom 2010; ONS December 2011. Deaths in Older Adults in England; National End of Life Care Intelligence Network, 2010. MDS Report 2010 – 2011 15
  • 16. National Overview Ethnicity Palliative care services are asked to categorise their patients according to the 17 ethnic groupings used by the Department of Health. On average, 87% of respondents did this. The proportion varied however, from 81% for Bereavement Support to 95% for Inpatients services. Chart 7: Percentage of units returning ethnicity data for new patients 100% 95% 94% 91% 80% 93% 90% 86% 83% 81% 60% 40% 20% 0% Inpatients Day Care Home Care Hospice @ Home Home Care & Hospice @ Home Hospital Suppport Bereavement Support Outpatients It was found that, on average, 5% of patients were described as non-white, comprising 1% black (African, Caribbean or other), 1% Indian, Pakistani or Bangladeshi, 1% as mixed race, with 1% of other ethnicity including Chinese. The exceptions to this are Hospice @ Home, which dropped from 84% to 83%, and combined services, which dropped from 94% to 90%. Table 6 also shows that the number of ethnic minority patients is increasing. A total of 8% of the population are reported as being of a non-white ethnicity. (ONS, 2001 Census) Prior to the 2008-9 collection, ethnicity was collected for the “All patients” form. With the revised MDS, the All Patients form was no longer used and ethnicity was collected across all settings. The overall response rate has continued to rise, as shown in Table 6 and Chart 8, although the rate of increase has slowed slightly. Table 6: Ethnicity trend data 2004/5 2005/6 2006/7 2007/8 2008/9 2009/10 2010/11 Response Rate 49% 54% 62% 72% 83% 86% 90% % Non White 4% 5% 4% 5% 5% 5% 5% “Other” as a % Of Non White 15% 22% 15% 17% 26% 32% 19% % Not Known 4% 8% 8% 11% 23% 26% 23% 16 MDS Report 2010 – 2011
  • 17. National Overview Chart 8: Ethnicity trends 100% 90% 80% 70% 60% Response Rate % Non White 50% 40% 30% Other as a % Of Non White 20% 10% 0% The shaded area indicates the period in which the revised MDS has been collected. Although the response rate to the ethnicity questions has improved, and the percentage of non-white patients is increasing, a large proportion of non-white patients had been recorded as ‘Other’. This ranged from 13% in Hospital Support, up to nearly a third (33%) of non-white patients in Outpatients. In the wider population, of those who identify themselves as non-white, 4.9% are in the category “non-white other” 8 but Table 6 shows that an average of 16% are being recorded as such by specialist palliative care services. As can be seen in Chart 8, there was a gradual downward trend in the percentage of people described as “Other non-white” until the revised MDS was introduced, when numbers increased to 32% for 2009-10. These have now dropped to 19%, but too many patients are still being classified as ‘non-white other’, possibly because staff members are noting that the person is physically not white, but not recording the person’s actual ethnicity. We strongly recommend that services urgently review their procedures for recording ethnicity and take steps to more accurately classify according to the Department of Health’s 17 ethnic groupings. Only by doing so can specialist palliative care providers be confident that ethnic minority groups have equal access to their services. Previous studies have suggested that this is currently not the case. 9 Resources exist, for example posters from the Dying Matters coalition (www.dyingmatters.org), which services can use to try to open up access to all sections of their local communities. 8 9 2001 Census; ONS. Improving the quality of palliative care; Race Equality Foundation; 2007. MDS Report 2010 – 2011 17
  • 18. National Overview Diagnosis Conditions other than cancer Chart 9 shows the proportions of people with conditions other than cancer seen by the different services. It is seen that Outpatient services have the highest percentage at 24%. This is still a low figure, as cancer accounts for about 28% of all deaths. 10 Chart 9: Proportions of cancer and conditions other than cancer, by setting Inpatients 87% Day Care 79% Home Care 11% 80% Hospice @ Home 17% 10% 75% Home Care & Hospice @ Home 10% 20% Cancer 30% 24% 40% 5% 20% 65% 0% 10% 16% 76% Outpatients 4% 10% 15% 79% Hospital Support 2% 50% Conditions other than cancer 60% 70% 80% 4% 11% 90% 100% Not recorded The last 12 years have seen an overall increase in both the percentage and the number of people with diagnoses other than cancer who have been cared for. NCPC’s Policy Unit (now the Policy and Parliamentary Affairs team) was set up in 2004 to ‘produce practical policy solutions for the development of existing palliative care services and the expansion of palliative care services into new disease areas.’ As Chart 10 illustrates, the biggest changes have occurred in the last 5 or 6 years. The most striking increases are in Outpatients (8% to 24%) and Hospital Support (6% to 20%). Day Care is also showing steady increases (5% to 17%). For specialist palliative care inpatient units the proportion of patients with a diagnosis other than cancer has increased from 3% to 11%. The trend is encouraging, but more remains to be done to ensure that people with diagnoses other than cancer have access to specialist services when needed. It would be useful to explore to what degree the higher proportion of people with diagnoses other than cancer found in Day Care than in Inpatient setting is appropriate and how much is an indication of further work needed in Community Care and Inpatient settings. Chart 10: Growth in non-cancer diagnosis 24% % diagnoses other than cancer 22% 20% Inpatients 18% 16% Day Care 14% 12% Community Care 10% 8% 6% Hospital Support 4% 2% Outpatients 0% 10 Cancer in the UK; Cancer Research UK; December 2011. 18 MDS Report 2010 – 2011
  • 19. National Overview A breakdown of diagnoses other than cancer can be seen in Chart 11. The proportion of “Other” diagnoses other than cancer has increased slightly to 39%, with a range from 19% for Day Care to 67% for Outpatients. We strongly recommend that conditions are accurately coded to reflect the conditions being referred and to demonstrate the importance of commissioning services that meet local population needs. There is debate over the accuracy of the coding of MND diagnoses with regard to the recording of mortality figures by the Office of National Statistics (ONS). Deaths of people with progressive supranuclear palsy (PSP) may have been incorrectly coded as Motor Neurone Disease (MND). 11 Dementia patients accounted for between 0.2% and 9.3% of diagnoses other than cancer, 0.04% to 1.90% of all patients with a diagnosis. Although a slight increase on last year, national figures show 15% of all deaths are directly attributable to dementia. 12 The number of people who die with dementia, however, is much higher at 1 in 3 people over 65. 13 The MDS is not set up to collect secondary diagnosis at present, so services are strongly recommended to track this locally. It is recommended that responders review their systems to record diagnosis and consider what scope there is for improvement. As with ethnicity, data about primary diagnosis is important to enable measurement of equity of access to specialist palliative care and to enable services to demonstrate what reach they have into the community they exist to serve. Chart 11: Breakdown of diagnoses other than cancer, by setting Percentage of non-cancer diagnoses 80% 70% 60% 50% 40% 30% 20% 10% 0% HIV/AIDS Inpatients 11 12 13 Motor Neurological Dementia Heart Failure Other Heart Chronic Neurone inc. Circulatory Respiratory Alzheimers Day Care Home Care Hospice @ Home Home Care & Hospice @ Home Chronic Renal Hospital Support All other diagnoses Outpatients NEoLCIN Bulletin No. 1; June 2010. Deaths from Alzheimer’s disease, dementia and senility; NEoLCIN November 2010. Dementia before death in ageing societies – the promise of prevention and the reality; Brayne C et al, PLoS Med 2006; 3; 10. MDS Report 2010 – 2011 19
  • 20. National Overview Cancer diagnoses The different types of cancer diagnoses can be seen in Chart 12. The highest rates were for cancers of the respiratory and digestive systems. Breast cancer was diagnosed for the most patients in Outpatient services. This may reflect recent changes in services and the growing specialisation in community services. Chart 12: Breakdown of cancer diagnoses by setting Percentage of cancer diagnoses 40% 35% 30% 25% 20% 15% 10% 5% Inpatients Day Care Home Care Hospice @ Home Home Care & Hospice @ Home Hospital Support Ill Defined Secondary Etc Multiple Other Specified Lymphoid Eye, Brain, Other CNS Urinary Male Genital Female Genital Breast Respiratory Digestive Lip, Oral, Pharynx 0% Outpatients Interventions Inpatient, Day Care and Outpatient services are asked to report on the number of clinical interventions in the year. However this year the number of services responding was again too low to allow any meaningful analysis. Responses were received from 39 Inpatient (27%), 46 Day Care (32%) and 28 Outpatient units (18%). Table 7 shows the breakdown of interventions for Day Care services. Table 7: Interventions in Day Care Intervention Count Min Max Mean Blood Transfusion 32 1 66 16 Infusional Therapy 41 1 183 22 Neural Blockade 3 1 18 8 Paracentesis 6 2 20 8 We have not included further tables due to the low response rate for these data. However we can provide further analysis upon request. As we continue in our vision of helping more people to be able to die in their preferred place of care, community teams will increasingly need to monitor what interventions are being delivered, and in particular, which interventions help to avoid unnecessary admissions to hospital. The Midhurst Macmillan Specialist Palliative Care Service, for example, have used such data to evidence a reduction in hospital admissions by 79% in 2010/11. 14 This will be an important piece of data in the piloting and introduction of the Palliative Care Funding Review’s proposed new funding mechanism. We therefore continue to recommend that services update their systems to record clinical interventions and return this data in the MDS annual collection. 14 National End of Life Care Programme newsletter issue 41; January 2012. 20 MDS Report 2010 – 2011
  • 21. Inpatients 2. Inpatients Key findings • Nearly a third of all diagnoses other than cancer were under “all other conditions” • Over two thirds of referrals were from the patient’s home • A quarter of referrals were from an acute hospital • Average length of stay was 13.5 days for services under independent management, 14.2 days for NHS managed services • Nearly half of the people referred to an inpatient service (45%) were discharged, which dispels the myth that hospices are a place where people go to die • 83% of discharges were to home Responses Data were collected from those services which provided a specialist palliative care inpatient service during 2010 to 2011, primarily to adults in a dedicated palliative care unit in England, Wales or Northern Ireland. Designated palliative care wards within general hospitals were included, but beds within the general wards of hospitals were excluded. Data were received from 146 services, a 76% response rate, covering 79% of independent units and 63% of NHS units. Out of the 146 units who responded, 142 services reported a total of 2,080 beds. The units varied in size from 1 to 51 beds, with a mean of 14.75, the most common size being 10 beds (25 units). The response rate to individual questions varied between 27% (Interventions) and 99% (Location after Stay) with a mean of 83% and a median of 96%. Age and sex Almost a third (30%) of new patients were aged under 65 (33% of new female patients, 28% of new male patients), with fewer than 1% under 25 and 12% over 84 (13% female, 11% male). Figures for all patients were similar; 32% under 65 (34% female, 29% male), 0.2% under 25, 12% over 84 (13% female, 11% male). It should be remembered that the MDS collection relates to adult specialist palliative care services. We would therefore not expect any significant level of reporting of activity for people aged below 18, and nor does this data reflect the complete numbers of young people (of at least up to 25 years) accessing specialist palliative care through children’s services. Different services will apply different age criteria on their services and transition from children’s palliative and end of life care services to adults’ is a complex and often underdeveloped area. NCPC is working with Together for Short Lives and Help the Hospices as part of a Transitions Partnership to improve quality of and access to care for young people in transition. MDS Report 2010 – 2011 21
  • 22. Inpatients Chart 13: Age and sex of new inpatients Under 16 0.0% 0.0% 16 to 18 0.0% 0.0% 19 to 24 0.2% 0.2% 25 to 64 32.3% 27.8% 26.3% 65 to 74 29.8% 27.9% 75 to 84 85 and Over 11.1% 31.0% 13.3% 0.0% 0.0% Not Known 0% 5% 10% 15% Female 20% 25% 30% 35% Male Table 8: Age and sex of inpatients New All Female Male Total Female Male Total Under 16 0 0 0 0 1 1 16 to 18 4 2 6 5 2 7 19 to 24 27 30 57 31 33 64 25 to 64 5,099 4,549 9,650 6,114 5,342 11,487 65 to 74 4,147 4,864 9,015 4,794 5,575 10,410 75 to 84 4,393 5,070 9,465 5,111 5,773 10,888 85 and Over 2,089 1,818 3,907 2,337 2,030 4,367 Not Known 7 7 18 17 17 38 Total 15,766 16,340 32,118 18,409 18,773 37,262 Male and female figures may not add up to the total figures, due to some units not reporting on their patients’ sex. 22 MDS Report 2010 – 2011
  • 23. Inpatients Ethnicity Ethnicity data were collected by 94.5% of Inpatient services. More than three quarters (77%) of new patients were described as White British. A total of 4,822 new patients (15.5%) were ‘not recorded’. The numbers of ‘non-white’ patients have been grouped together in Chart 14, as they constitute such a small proportion of the figures. A breakdown of these figures is shown in Chart 15. Chart 14: Ethnicity – new inpatients White British 77% White Irish 2% White Other 2% Non-White 3% Not Recorded 15% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% Chart 15: Distribution of “non-white” categories Mixed White / Black Caribbean 2% Mixed White / Black African 2% Mixed White / Asian 1% Mixed Other 10% Indian 10% Pakistani 5% Bangladeshi 3% Asian Other 9% Black Caribbean 21% Black African 8% Black Other 4% Chinese 3% Other 21% 0% 5% 10% 15% 20% 25% Over a fifth of those recorded as being non-white (21.2%) were under the category ‘other’. As we recommend on page 17, services should urgently review their procedures for recording ethnicity and take steps to more accurately classify according to the Department of Health’s 17 ethnic groupings. MDS Report 2010 – 2011 23
  • 24. Inpatients Primary diagnosis – cancer A primary diagnosis of cancer was recorded for 31,325 new referrals to Inpatient units (87%). Cancer figures were divided into 12 diagnoses. Digestive and respiratory cancers accounted for half the diagnoses (50%). Chart 16: Diagnoses of new inpatients with a primary diagnosis of cancer Lip / Oral / Pharynx 2% Digestive 29% Respiratory 21% Breast 9% Female Genital 6% Male Genital 7% Urinary 6% Eye / Brain / Other CNS 3% Lymphoid 4% Other (Specified) 7% Multiple 1% Ill-Defined / Secondary / Etc 5% 0% 24 5% 10% 15% 20% 25% 30% 35% MDS Report 2010 – 2011
  • 25. Inpatients Primary diagnosis – conditions other than cancer Excluding the patients with a ‘not known’ diagnosis, 4,024 new patients (11%) had a diagnosis other than cancer. The proportion of new patients in the different units ranged from 1% to 38%. Over a third (36%) of responding units had more than 10% of new patients with a condition other than cancer while 2 units had cancer patients only. The number of dementia patients recorded was low at just 2%. It should be noted that dementia is often under-diagnosed and we would also expect it to be a secondary condition in a significant number of cases (See further discussion in ‘National Overview’). Nearly a third (31%) of diagnoses other than cancer were recorded under ‘Other’. It is not possible to say whether these are as a result of un-coded diagnoses, or other unspecified conditions. In the case of the latter, we may need to revise the questionnaire used to collect these data. We would very much welcome services’ input on this issue, as it is unacceptable that 1 in 3 people with non-cancer conditions are being admitted to inpatient services but their condition not recorded. There is a need for accurate coding to reflect the conditions being referred and to demonstrate the need for commissioning services. Chart 17: Diagnoses of new inpatients with a primary diagnosis other than cancer HIV / AIDS 0% Motor Neurone 13% Other Neurological 10% Dementia inc. Alzheimers 2% Heart Failure 11% Other Heart / Circulatory 7% Chronic Respiratory 18% Chronic Renal 6% All Other Conditions 31% 0% 5% 10% 15% 20% 25% 30% 35% Analysis of inpatient stays Location before admission The great majority of new admissions (69%) were from the patient’s own home, with 25% from an acute hospital. Chart 18: Location of inpatients before admission Home 69% Care Home 2% Acute Hospital 25% Community Hospital 1% Other 1% Not Recorded 2% 0% 10% MDS Report 2010 – 2011 20% 30% 40% 50% 60% 70% 80% 25
  • 26. Inpatients Table 9: Location of inpatients before admission Location Count Home 28,145 Care Home 703 Acute Hospital 10,289 Community Hospital 348 Other 587 Not Recorded 624 Length of stay The mean length of stay was much the same as for the 2009-10 survey and is shown in Table 10. The mean length of stay in an NHS-managed inpatient unit was 13.5 days, compared with 14.2 days in an independently-managed unit, see Table 11. Table 10: Length of stay by size of unit Number of Beds 3-6 7 - 10 11 - 15 16 - 20 21 - 25 Over 25 All Units Number of responding units 10 39 24 39 3 13 128 Mean length of stay in days 12.4 12.3 12.9 14.2 16.7 15.6 13.7 Chart 19: Length of stay by size of unit Mean length of stay in days 20 16.7 15 12.4 12.3 3-6 7 - 10 12.9 15.6 14.2 13.5 10 5 0 11 - 15 16 - 20 Number of beds in unit 21 - 25 Over 25 All Units Table 11: Comparison of average length of stay between NHS and independent units Management Independent 13.5 NHS 26 Average Length of Stay 14.2 MDS Report 2010 – 2011
  • 27. Inpatients Location after end of stay Just over half of those no longer being cared for by the service (55%) had died. The remainder had been discharged; of these, the majority (83%) were discharged to home. The fact that 45% of admissions ended in discharge should go some way to dispelling the myth that hospices are just somewhere where people go to die. Chart 20: Location after end of stay Died 55% Home 38% Care Home 4% Hospital (acute) 2% Hospital (community) 0% Other 1% Not Recorded 1% 0% 10% 20% 30% 40% 50% 60% Table 12: Location after end of stay Location Died / Discharged Discharged Died 54.6% - Home 37.8% 83.4% Care Home 3.7% 8.1% Hospital (acute) 1.8% 4.1% Hospital (community) 0.3% 0.7% Other 0.9% 2.1% Not Recorded 0.8% 1.7% MDS Report 2010 – 2011 27
  • 28. Inpatients Bed usage Services were asked to calculate the bed occupancy rate from a midnight count of the number of beds actually occupied (or reserved for a patient temporarily away), as a percentage of available beds. Available beds are all those which are occupied, reserved, or available for use the following day. Beds kept empty because of staff shortages, or ward closures, are considered unavailable. Beds kept empty for other reasons, such as a recent death, are considered available. The mean bed occupancy overall was 75%. The variations in occupancy were between 41% and 100%. The numbers of reserved beds varied considerably, suggesting different ways of counting. There was a mean of 1% reserved beds, as a percentage of beds in use (occupied or reserved) but 43% of units (56) recorded no reserved beds (down from 52% last year) while others recorded up to 12% (down from 14%). Reserved status should only be used where a patient is temporarily away, and not where a new patient is to be admitted the following day. It was impractical to check the validity of this in all cases, but it is known that there has been misinterpretation of this in the past. The mean value of throughput (admissions per bed per year, including any beds designated for day patients) was 21.8 admissions per available bed, ranging from 9.2 to 53.4 excluding outliers. The mean turnover interval when a bed is empty between admissions is defined as the number of unoccupied bed days divided by the number of completed stays (including day case admissions). This was found to be 4.2 days, varying between 0.9 days and 9.9 days. Table 13: Inpatients – Bed usage Data Item Minimum Mean Maximum Number Responding % Bed Occupancy 41.3% 73.3% 100.0% 139 Throughput (Admissions per bed per year) 9.2 21.8 53.4 138 Turnover (Interval between admissions) 0.9 4.2 9.9 130 28 Number of Admissions 40,410 MDS Report 2010 – 2011
  • 29. Inpatients Beds analysis Over 12 years, an analysis of services reporting on their total number of beds showed: • The average number of beds per unit has fallen from 15.5 to 14.7 • The average number of patients per unit has increased from 237.2 to 258.1 More patients, with fewer beds would imply that the average length of stay would decrease, whereas it has actually increased from 12.4 to 12.6 days This has been achieved through an increase in the average number of: • Available beds per unit, up from 12.9 to 14.2 • Occupied beds per unit, up from 9.7 to 10.7 The average number of available beds per unit has almost reached the average number of total beds per unit. Chart 21: Bed usage analysis 18 16 Number of beds 14 12 10 8 6 4 2 0 99/00 00/01 01/02 02/03 Beds per Unit 03/04 04/05 05/06 06/07 Available beds per unit 07/08 08/09 09/10 10/11 Occupied beds per unit Table 14: Bed usage analysis MDS year Total beds per unit Patients per unit Mean of length of stay Available beds per unit Available beds as percentage of total Occupied beds per unit Occupied beds as percentage of available 99/00 15.5 237.2 13.1 12.9 83% 9.7 75% 00/01 15.6 257.3 13.4 12.9 82% 9.8 76% 01/02 15.4 242.9 13.1 12.7 83% 8.9 70% 02/03 15.5 247.6 12.8 12.0 77% 9.0 75% 03/04 15.4 241.4 12.7 12.7 83% 9.0 71% 04/05 14.9 240.3 13.3 13.3 89% 9.2 69% 05/06 14.6 235.6 12.7 11.6 79% 8.1 70% 06/07 14.8 257.0 13.2 13.7 93% 9.3 68% 07/08 15.2 261.6 12.9 14.1 93% 10.4 74% 08/09 14.7 254.3 13.9 14.1 96% 10.3 74% 09/10 14.8 260.1 13.3 14.4 98% 10.6 74% 10/11 14.7 258.1 13.7 14.2 97% 10.7 75% MDS Report 2010 – 2011 29
  • 30. Inpatients National estimates From the data supplied it is possible to make estimates of palliative care activity nationally in terms of admission, deaths and discharges. This makes the assumption that units which did not respond have similar patterns of activity to those which did respond. As there is such a high response rate, it seems likely that estimates based on the data collected will be reasonably accurate. In previous years data has been weighted to allow for varying response rates from the differently sized units, but it has been noticeable that with the improved response rates, there has been little difference between the aggregate data and the weighted data. The ratio of deaths to discharges has increased from last year’s figure of 1.03 to 1.22. In other words, 55% of all admissions (including re-admissions) result in death. The ratio of deaths to new patient admissions is 0.74. This means over a quarter of patients (29%) did not die in a palliative care inpatient unit on the first or any subsequent admission during the year. Table 15 gives details of admissions, deaths and discharges from those units which responded to all the relevant parts of the survey. Table 15: National estimates – Inpatient units Responding units National totals and estimates No of units 142 193 Total beds 2,037 2,769 Response rate for units 74.3% - Response rate for beds 97.2% - New patient admissions 32,283 43,878 Total patients 36,671 49,842 Deaths 22,828 31,027 Discharges 18,738 25,468 Deaths to discharges 1.22 Ratio of new patient admissions to deaths & discharges 0.78 Ratio of deaths to deaths & discharges 0.55 Ratio of deaths to new patient admissions 0.71 30 MDS Report 2010 – 2011
  • 31. 3. Day Care Key findings • The proportion of non-white patients recorded as “Other” has halved, but is still nearly a quarter of total non-white patients • The mean length of care was six months • The mean caseload was 53 patients and the median caseload was 45 patients • Over a quarter of patients with a primary diagnosis other than cancer were diagnosed with chronic respiratory disease • Nearly a third of new patients with a diagnosis other than cancer had a neurological condition. Responses Data were received from 146 services, a 72% response rate, covering 63% of independent units and 27% of NHS units. Some respondents did not answer all the questions, so the response rate for individual questions does vary. The response rate varied between 32% (Interventions) and 98% (Age & Sex and Location before Admission) with a mean of 82% and a median of 91%. Age and sex The mean number of new patients per service was 105 with a range from 1 to 696. New patients comprised 67% of the total number attending Day Care. This total included patients already receiving day care at the start of the period, together with any re-referrals of patients discharged in the previous year. Most services were able to provide details of age and diagnosis for new patients. Nearly a third of new patients were under 65 and of 15,084 new patients there were 37 who were under 25 (0.2%). More females than males attended Day Care (57% female). Chart 22: Day Care new patients – age and sex Under 16 0% 0% 16 to 18 0% 0% 19 to 24 0% 0% 25 to 64 35% 26% 25% 65 to 74 29% 28% 75 to 84 33% 11% 11% 85 and Over 0% 0% Not Known 0% 5% 10% 15% Female 20% Male 25% 30% 35% 40%
  • 32. Day Care Table 16: Day Care patients – age and sex New All Female Male Total Female Male Total Under 16 2 2 4 11 7 18 16 to 18 1 1 2 3 4 7 19 to 24 22 9 31 37 10 47 25 to 64 2,880 1,765 4,645 5,350 2,984 8,334 65 to 74 2,059 2,023 4,082 3,404 3,027 6,432 75 to 84 2,280 2,279 4,560 3,718 3,390 7,111 85 and Over 923 778 1,701 1,416 1,149 2,567 Not Known 37 17 59 62 32 177 Total 8,204 6,874 15,084 14,001 10,603 24,693 Male and female figures may not add up to the total figures, due to some units not reporting on their patients’ sex. Ethnicity Ethnicity data were collected by 94% of Day Care services. More than three quarters (76%) were described as white British. A total of 2,490 new patients (17%) were ‘not recorded’. The numbers of ‘non-white’ patients have been grouped together in Chart 23, as they constitute such a small proportion of the figures. A breakdown of these figures is shown in Chart 24. Chart 23: Day Care new patients – ethnicity White British 76% White Irish 1% White Other 2% Non-White 4% Not Recorded 17% 0% 32 10% 20% 30% 40% 50% 60% 70% 80% MDS Report 2010 – 2011
  • 33. Day Care Chart 24: Day Care new patients – non white Mixed White / Black Caribbean 2% Mixed White / Black African 1% Mixed White / Asian 2% Mixed Other 21% Indian 11% Pakistani 4% Bangladeshi 1% Asian Other 8% Black Caribbean 17% Black African 6% Black Other 3% Chinese 1% Other 24% 0% 5% 10% 15% 20% 25% 30% Although the number of those under the category ‘other’ has more than halved from the 50% recorded last year, there are still nearly a quarter (24%) recorded under this category. As we recommended on page 17, services should urgently review their procedures for recording ethnicity and take steps to more accurately classify according to the Department of Health’s 17 ethnic groupings. Primary diagnosis – cancer A primary diagnosis of cancer was recorded for 11,609 new referrals to Day Care units (85%). Again, the largest numbers were diagnosed with digestive or respiratory cancers. There was a higher proportion of patients diagnosed with breast cancer than in Inpatients (14% compared with 9%). Chart 25: Diagnoses of new Day Care patients with a primary diagnosis of cancer Lip / Oral / Pharynx 2% Digestive 25% Respiratory 21% Breast 14% Female Genital 6% Male Genital 8% Urinary 5% Eye / Brain / Other CNS 5% Lymphoid 6% Other (Specified) 5% Multiple 0% Ill-Defined / Secondary / Etc 3% 0% 5% MDS Report 2010 – 2011 10% 15% 20% 25% 30% 33
  • 34. Day Care Table 17: Diagnoses of Day Care patients with a diagnosis of cancer Cancer site New All Lip / Oral / Pharynx 235 398 Digestive 2,965 4,396 Respiratory 2,503 3,700 Breast 1,604 2,976 Female Genital 648 1,131 Male Genital 930 1,488 Urinary 582 869 Eye / Brain / Other CNS 526 899 Lymphoid 638 1,198 Other (Specified) 610 929 Multiple 55 80 Ill-Defined / Secondary / Etc 313 551 Total 11,609 18,615 34 MDS Report 2010 – 2011
  • 35. Day Care Primary diagnosis – conditions other than cancer Excluding the patients with a ‘not known’ diagnosis, 2,115 new patients (15%) had a diagnosis other than cancer. Of the 132 services responding, over a quarter (27%) had more than 20% patients, reaching up to over 50% in the case of two services. There were 3 services which recorded no patients with a condition other than cancer. The proportion of diagnoses other than cancer recorded under “Other” increased slightly from 17% last year to 18% this year. Chart 26: Diagnoses of new Day Care patients with a primary diagnosis other than cancer HIV / AIDS 1% Motor Neurone 15% Other Neurological 17% Dementia inc. Alzheimers 0% Heart Failure 14% Other Heart / Circulatory 5% Chronic Respiratory 26% Chronic Renal 3% All Other Conditions 18% 0% 5% 10% 15% 20% 25% 30% Table 18: Diagnoses of Day Care patients with a primary diagnosis other than cancer Diagnosis New All HIV / AIDS 14 29 Motor Neurone 323 599 Other Neurological 358 809 Dementia inc. Alzheimer's 6 9 Heart Failure 306 497 Other Heart Circulatory 115 245 Chronic Respiratory 551 915 Chronic Renal 56 84 All Other Non-Cancer 386 756 Total 2,115 3,943 Access to specialist palliative care in the day care setting for people with dementia is extremely low. As discussed in the National Overview, many people with dementia will have another condition resulting in their dementia being a secondary condition, and as such not captured by the MDS. Nevertheless that only 9 patients with a primary diagnosis of dementia accessed day care in 2010-11 is concerning. We would strongly recommend day care services review their admission policies in relation to diagnosis to ensure that as many people as possible are able to access the benefits of specialist palliative care. Several resources have been developed by NCPC to help services to address this issue. 15 15 www.ncpc.org.uk/conditions MDS Report 2010 – 2011 35
  • 36. Day Care Consultations For the three years that we have collected data on consultations, the figures have varied quite widely. Although 74% of services responded in part to this question, the responses for each health care professional varied from 20% to 62%. It is difficult to know how much this variation is due to services being unable to record the contacts or not having those health care professionals providing consultations. With the implementation of the Palliative Care Funding Review recommendations, this is a significant area in which services would need to record data. Face to face consultations A total of 108 organisations supplied data on the number of face to face consultations made by health care professionals, an increase of 7 on last year. Over a quarter of a million (254,517) consultations were recorded, an increase of 16%. Table 19: Consultations – face to face Health care professional Face to face Max contacts in unit Mean Median Services Medical Consultant 1,532 0.6% 18.9% 18.0 12.0 49 Other Doctor 11,306 4.4% 56.3% 127.0 84.0 67 Clinical Nurse Specialist 17,108 6.7% 74.9% 180.1 70.5 62 Other Nurse 101,094 39.7% 100.0% 981.5 879.0 91 Physiotherapist 24,200 9.5% 87.8% 249.5 178.0 71 Occupational Therapist 14,221 5.6% 39.5% 161.6 100.5 52 Social Worker 7,172 2.8% 72.5% 84.4 78.5 50 Pastoral / Spiritual Carer 12,654 5.0% 97.4% 147.1 129.0 50 Psychologist / Psychotherapist 3,061 1.2% 21.4% 38.3 22.0 29 Complementary Therapist 37,478 14.7% 99.5% 398.7 417.0 75 Other health care professional 24,335 9.6% 87.7% 286.3 233.0 58 Total 254,517 2,356.6 2,111.0 108 “Services” shows the number of organisations which reported at least one contact with each health care professional. • Services responding increased from 101 to 108 (+7%) • Consultations recorded increased from 220,244 to 254,517 (+16%) • The number of consultations by social workers and complementary therapists dropped. (-12%, -3% and -9% respectively) • The number of consultations by clinical nurse specialists dropped by 2,242 but one service reported that they had closed their Day Care service and opened a new service without CNS support, reducing their number of consultations by 4,107 • The average increase in contacts was 28%, ranging from +3% for Other Doctors to +54% for medical consultants • The number of services reporting contacts increased for each type of health care professional, with the exception of social workers with one fewer service reporting and other health care professionals which remained the same • The average increase in services reporting was 13%, ranging from +4% for occupational therapists to +29% for medical consultants Comparing the 79 organisations who submitted consultation data for both 2009-10 and 2010-11, the number of first consultations was down overall for most professionals except medical consultants, social workers, chaplains, psychologists and other health care professionals which were slightly up. 36 MDS Report 2010 – 2011
  • 37. Day Care Of these 79 organisations, follow up consultations were considerably lower for complementary therapists and clinical nurse specialists, although nearly three quarters of the drop in CNS consultations was down to one service changing the Day Care service they provide. Social Workers and Pastoral / Spiritual Carers showed smaller falls in the number of consultations. Telephone consultations A total of 91 organisations recorded telephone consultations, up nearly 10% on last year. However 88,240 consultations were recorded, a decrease of 6% on last year. This was due to a 73% drop in telephone contacts with Clinical Nurse Specialists. Table 20: Consultations – telephone Health Care Professional Telephone contacts Max Mean Median Services Medical Consultant 845 1.0% 14.5% 12.2 3.0 24 Other Doctor 2,025 2.3% 100.0% 27.0 18.5 38 Clinical Nurse Specialist 9,338 10.6% 100.0% 118.2 32.0 41 Other Nurse 55,534 62.9% 100.0% 638.3 299.0 81 Physiotherapist 1,244 1.4% 41.9% 16.8 12.5 38 Occupational Therapist 3,327 3.8% 71.7% 46.2 26.0 33 Social Worker 7,499 8.5% 96.0% 107.1 87.0 33 Pastoral / Spiritual Carer 657 0.7% 17.2% 10.1 5.0 17 Psychologist / Psychotherapist 285 0.3% 7.5% 4.3 9.5 16 Complementary Therapist 1,482 1.7% 100.0% 20.3 9.0 31 Other health care professional 3,620 4.1% 99.7% 53.2 22.5 40 Total 88,240 – – 969.7 591.0 91 “Services” shows the number of organisations which reported at least one contact with each health care professional. • Services responding increased from 83 to 91 (10%) • Telephone consultations recorded by clinical nurse specialists dropped from 34,849 to 9,338 (-73%) • Other Nurses showed the largest increase in consultations, over 10,000 (+24%) • Psychologist / psychotherapist and complementary therapist telephone contacts more than doubled (+101% and +141%) and pastoral / spiritual care telephone contacts nearly trebled (+189%) Comparing the 125 organisations who have submitted telephone contact data for at least one of the last three years, the mean number of contacts has risen from 556 to 970. The median has risen from 410 to 591. Comparing the 42 organisations who have submitted telephone contact data for all of the last three years, the mean number of contacts has risen from 630 to 1003. The median has risen from 468 to 830. MDS Report 2010 – 2011 37
  • 38. Day Care Deaths and discharges The number of patients who died or were discharged during the year was calculated from the total number of deaths and discharges, minus the number of re-referrals, since each re-referral should account for one discharge. Overall, 17,291 patients either died or were discharged during the year (68% of all patients). Length of care and caseload The length of time patients were under the care of the day centre prior to discharge was given by 133 services (89% of total number). Of 13,889 patients, over half (58%) attended for 90 days or fewer while 24% attended Day Care for more than 180 days. The average length of care recorded was about 6 months, ranging from less than a week to 18 months. Chart 27: Length of care for Day Care services 1 day 6% 2 to 14 days 12% 15 to 30 days 13% 31 to 90 days 27% 91 to 180 days 20% 181 to 365 days 14% Over 1 Year 10% 0% 5% 10% 15% 20% 25% 30% The caseload is the average daily number of patients registered as Day Care patients. It is calculated from the number of deaths and discharges in the year multiplied by the fraction of the year for which they received care. Using the data shown in Table 21, where the median length of care was found to be 167 days, the mean caseload was 53 patients (up from 45 last year), although the median was lower at 45 patients (36 last year). Table 21: Patient care Data Item 38 17,291 deaths and discharges 0.3% to 32.0% Mean for these services, based on mean length of care 1,519 long term patients 6.0% Range – 127 (88.2%) % of total number of patients 127 (87.0%) 0.0 to 795.0 days 53 Median based on length of care Caseload 167 days Number of patients 128 (87.7%) Median of averages Services Responding 180 days Range Long term patients (registered for more than a year) Results Mean of service averages Average length of care Analysis 45 MDS Report 2010 – 2011
  • 39. Day Care Chart 28: Average (mean) caseload trend 60 50 40 30 20 10 0 Mean caseload Day Care use A Day Care session is defined as the time that one centre is open on one day. Reports from 89% of the total number of units showed that the average number of sessions per unit per year was 211.8, about 4 per week. This ranged from 52 (one per week) to 418 (about eight per week) with outliers of 623 and 703. (Some services provide day care on more than one site.) There is an average of 14.9 places per session, ranging from 7 to 54. The mean attendance rate is 74% ranging from 46% to 100%. Table 22: Day Care places Results Mean no of sessions per year per unit 14.9 Range of number of places 7 to 54 % use of available places 74% Range of % use of available places 130 (89%) 27,531 sessions 402,792 places 230,193 attendances 52 to 418 Mean number of places per session Numbers in responding services 211.8 Range of number of sessions Number of services responding 46% to 100% MDS Report 2010 – 2011 39
  • 40. Community Services 4. Community Services Key findings • Mean length of care for Home Care was about 123 days. • Mean length of care for Hospice @ Home was about 35 days. • Mean length of care for combined services was about 108 days. • Proportion of non-white patients recorded as “Other” was lower than in other settings, but the number of “Mixed Other” was much higher for Home Care and Hospice @ Home services (43% and 41% respectively). • A third of Home Care patients with a diagnosis other than cancer were recorded under “all other conditions”. • A fifth of Hospice @ Home patients with a diagnosis other than cancer were recorded under “all other conditions”. • A quarter of combined services’ patients with a diagnosis other than cancer were recorded under “all other conditions”. Defining Home Care, Hospice @ Home and combined services For the purpose of our analysis we used the following three definitions: Home Care: A community service which self-identifies as providing home care, a mainly advisory service, based in the patient’s home with CNS input Hospice @ Home (H@H): A community service which self-identifies as providing ‘Hospice @ Home’, a mainly hands on nursing service, based in the patient’s home without CNS input Combined service: A single community service which self-identifies as providing both ‘Hospice @ Home’ and Home Care Responders were asked to indicate if they considered themselves to be providing Home Care, Hospice @ Home or a combined service. The aim is to try to distinguish between primarily advisory services delivered by hospice or NHS based community specialist palliative care teams and other more sustained care provided in the patient’s home, commonly referred to as Hospice @ Home. However, there is currently no agreed definition of Hospice @ Home or Home Care, as services differ widely in purpose, staffing and mode of delivery. It was decided that any service which did not self identify as Home Care or Hospice @ Home would be grouped according to Clinical Nurse Specialist (CNS) input. Those services stating that they included CNS input were added to the Home Care category while those with no CNS input were added to the H@H category. Those who self-identified as either, or as a combined service, were left in their chosen category, regardless of whether they specified CNS input. Clearly this is not an ideal long term solution. It would be helpful if definitions could be agreed for different types of community services. 40 MDS Report 2010 – 2011
  • 41. Community Services Response Data was sought from all the palliative care services known to be providing care in the community, primarily to adults, in England, Wales and Northern Ireland during 2010-11. • 183 units responded, sixteen of which sent two returns and one sent three returns • 258 units were expected, giving a 71% response rate. NHS-managed services accounted for 39% of returns, whilst 61% were independently-managed • There were 102 units who identified themselves as Home Care services • A total of 42 services identified themselves as H@H • Combined Home Care and H@H services accounted for 39 returns Table 23: Community Services – responses Service type Services responding Independent management NHS management Home Care 102 50% 50% Hospice @ Home 42 86% 14% Home Care and Hospice @ Home 39 64% 36% For Home Care, the response rate for each question varied between 77% (Telephone Details) and 98% (Outcome) with a mean of 86% and a median of 86%. For Hospice @ Home, the response rate for each question varied between 46% (Telephone Details) and 100% (Age & Sex) with a mean of 80% and a median of 85%. For combined services, the response rate for each question varied between 69% (Telephone Details) and 97% (Age & Sex, Face to Face and Outcome) with a mean of 86% and a median of 90%. MDS Report 2010 – 2011 41
  • 42. Community Services Age and sex Home Care Chart 29 shows patient demographics for Home Care services. On average, each service cared for over 550 new patients, varying between 6 and 1,842 patients. These new patients comprised over two thirds of the total number cared for (68%). This total includes those already receiving care at the start of the year, any re-referrals of those who had received care in a previous year and been discharged, as well as new patients. Over a quarter of these new patients were under 65 (30%) with 17% aged 85 or over. The breakdown of age and sex was similar for each type of community care service. Chart 29: Home Care new patients - age and sex Under 16 0% 0% 16 to 18 0% 0% 0% 0% 19 to 24 25 to 64 28% 24% 23% 65 to 74 28% 29% 75 to 84 85 and Over 32% 19% 14% 0% 0% Not Known 0% 5% 10% 15% 20% Female 25% 30% 35% Male Table 24: Age and sex for Home Care patients New All Female Male Total Female Male Total Under 16 10 11 21 19 19 38 16 to 18 8 9 17 12 18 30 19 to 24 90 87 177 172 148 320 25 to 64 7,309 6,646 13,956 12,263 10,099 22,363 65 to 74 6,078 7,648 13,734 9,379 11,018 20,426 75 to 84 7,432 8,846 16,283 10,662 12,340 23,009 85 and Over 4,989 3,952 8,932 6,542 5,117 11,663 Not Known 87 95 194 116 120 252 Total 26,003 27,294 53,314 39,165 38,879 78,101 Male and female figures may not add up to the total figures, due to some units not reporting on their patients’ sex. 42 MDS Report 2010 – 2011
  • 43. Community Services Hospice @ Home Chart 30 shows patient demographics for Hospice @ Home services. On average, each service cared for nearly 250 new patients, varying between 15 and 765 patients. These new patients comprised over three quarters of the total number cared for (87%). This total includes those already receiving care at the start of the year, any re-referrals of those who had received care in a previous year and been discharged, as well as new patients. Nearly a quarter of these new patients were under 65 (24%), with 19% aged 85 or over. Chart 30: Hospice @ Home new patients - age and sex Under 16 0% 0% 16 to 18 0% 0% 19 to 24 0% 0% 25 to 64 24% 22% 24% 65 to 74 28% 31% 75 to 84 85 and Over 34% 20% 16% 0% 0% Not Known 0% 5% 10% 15% 20% Female 25% 30% 35% 40% Male Table 25: Age and sex for Hospice @ Home patients New All Female Male Total Female Male Total Under 16 5 15 20 15 32 47 16 to 18 1 2 4 6 4 11 19 to 24 6 8 15 25 16 42 25 to 64 1,131 1,112 2,360 1,267 1,223 2,607 65 to 74 1,129 1,442 2,730 1,265 1,608 3,019 75 to 84 1,454 1,737 3,425 1,600 1,921 3,755 85 and Over 948 794 1,846 1,046 876 2,019 Not Known 5 1 8 5 1 8 Total 4,679 5,111 10,408 5,229 5,681 11,508 Male and female figures may not add up to the total figures, due to some units not reporting on their patients’ sex. MDS Report 2010 – 2011 43
  • 44. Community Services Combined Home Care & Hospice @ Home Chart 31 shows patient demographics for combined Home Care and Hospice @ Home services. On average, each service cared for over 500 new patients, varying between 2 and 2,069 patients. These new patients comprised nearly three quarters of the total number cared for (72%). This total includes those already receiving care at the start of the year, any re-referrals of those who had received care in a previous year and been discharged, as well as new patients. Over a quarter of these new patients were under 65 (27%), with 19% aged 85 or over. Chart 31: Combined Service new patients - age and sex Under 16 0% 0% 16 to 18 0% 0% 19 to 24 0% 0% 26% 25 to 64 23% 23% 65 to 74 28% 29% 75 to 84 33% 21% 85 and Over 16% 0% 0% Not Known 0% 5% 10% 15% Female 20% 25% 30% 35% Male Table 26: Age and sex for combined Home Care & Hospice @ Home patients New All Female Male Total Female Male Total Under 16 5 1 6 8 2 10 16 to 18 4 2 6 5 4 9 19 to 24 19 17 36 27 28 55 25 to 64 2,491 2,375 4,871 3,884 3,387 7,278 65 to 74 2,265 2,792 5,060 3,183 3,846 7,033 75 to 84 2,843 3,322 6,167 3,809 4,314 8,125 85 and Over 2,015 1,585 3,602 2,498 1,973 4,473 Not Known 47 40 108 154 143 341 Total 9,689 10,134 19,856 13,568 13,697 27,324 Male and female figures may not add up to the total figures, due to some units not reporting on their patients’ sex. 44 MDS Report 2010 – 2011
  • 45. Community Services Ethnicity Ethnicity data were collected from 92% of community services. Nearly three quarters (74%) were described as White British. A total of 11,048 new patients (22%) were ‘not recorded’. The numbers of ‘non-white’ patients have been grouped together in Chart 32, as they constitute such a small proportion of the figures. A breakdown of these figures is shown in Chart 33. Chart 32: Community Service new patients – ethnicity 70% White British 81% 61% 1% 1% 1% White Irish 2% 1% 2% White Other 4% 3% 4% Non-White 22% Not Recorded 14% 32% 0% 10% 20% Home Care MDS Report 2010 – 2011 30% 40% Hospice @ Home 50% 60% 70% Home Care & Hospice @ Home 80% 90% 45
  • 46. Community Services Chart 33: Community Service new patients – non white 1% 1% 2% Mixed White / Black Caribbean 0% Mixed White / Black African 2% 0% 1% 1% 3% Mixed White / Asian 43% 41% Mixed Other 1% 6% 5% Indian 23% 8% Pakistani 10% 7% 4% Bangladeshi 0% 3% 6% 6% Asian Other 10% 11% 11% Black Caribbean 25% 4% Black African 2% Black Other 2% 1% 10% 3% 2% Chinese 5% 4% 12% 14% Other 8% 0% 5% 10% Home Care 15% 20% Hospice @ Home 25% 30% 35% 40% 45% 50% Home Care & Hospice @ Home The percentage of patients whose ethnicity was recorded as “other” in community care was considerably smaller than in other settings, ranging from 8% to 14%. However both Home Care and Hospice @ Home services recorded over 40% of patients under Mixed Other. No other setting recorded more than 21% of patients under this category. As we recommend on page 17, services should urgently review their procedures for recording ethnicity and take steps to more accurately classify according to the Department of Health’s 17 ethnic groupings. 46 MDS Report 2010 – 2011
  • 47. Community Services Primary diagnosis – cancer Excluding patients with a ‘not known’ diagnosis: • 89% of patients using a Home Care service had a diagnosis of cancer • 83% of patients using a Hospice @ Home service had a diagnosis of cancer • 83% of patients using a combined service had a diagnosis of cancer Although the three service types had a wide variation in the numbers of units responding and a different split between independent and NHS management, the breakdown of diagnosis is very similar for each type of service. Chart 34: Community Service diagnosis – cancer 2% 3% 2% Lip / Oral / Pharynx 29% 30% 30% Digestive 21% 22% Respiratory 23% 9% 9% 9% Breast 5% 5% 5% Female Genital 7% 6% 8% Male Genital 6% 6% 5% Urinary 4% 5% 4% Eye / Brain / Other CNS 5% 5% 5% Lymphoid 6% 5% 5% Other (Specified) 1% 1% 1% Multiple 4% 3% 3% Ill-Defined / Secondary / Etc 0% 5% Home Care MDS Report 2010 – 2011 10% 15% Hospice @ Home 20% 25% 30% 35% Home Care & Hospice @ Home 47
  • 48. Community Services Table 27: Community Care diagnosis – cancer Home Care Hospice @ Home Combined New All New All New All Lip / Oral / Pharynx 845 1,265 173 187 241 365 Digestive 12,252 17,629 1,998 2,093 3,769 5,199 Respiratory 9,109 12,546 1,429 1,447 2,943 3,927 Breast 3,912 6,666 583 637 1,129 1,883 Female Genital 2,331 3,663 322 354 642 986 Male Genital 3,049 4,715 427 471 1,008 1,484 Urinary 2,441 3,463 430 469 676 914 Eye / Brain / Other CNS 1,524 2,346 315 357 500 713 Lymphoid 2,211 3,371 328 373 597 906 Other (Specified) 2,656 3,987 362 412 634 874 Multiple 307 442 37 38 113 165 Ill-Defined / Secondary / Etc 1,801 2,421 218 246 323 435 Total 42,438 62,514 6,622 7,084 12,575 17,851 48 MDS Report 2010 – 2011
  • 49. Community Services Primary diagnosis – conditions other than cancer Excluding patients with a ‘not known’ or ‘not recorded’ diagnosis, for Home Care services there were 5,659 new referrals (12%) with a primary diagnosis other than cancer. For Hospice @ Home services there were 1,198 new referrals (15%). For combined services there were 2,776 new referrals (15%). Table 28: Patients with a diagnosis other than cancer in community services Home Care Hospice @ Home Home Care and Hospice @ Home New Referrals 5,659 (12%) 1,198 (15%) 2,776 (15%) Number of Units 88 35 33 Number seeing cancer patients only 1 0 0 Units seeing fewer than 10% of patients with a diagnosis other than cancer patients 40 (46%) 6 (17%) 8 (24%) Units seeing between 10% and 20% of patients with a diagnosis other than cancer patients 42 (48%) 18 (51%) 20 (61%) Units seeing more than 20% of patients with a diagnosis other than cancer patients 6 (7%) 11 (31%) 5 (15%) Chart 35: Community services – patients with a diagnosis other than cancer 0% 0% 0% HIV / AIDS 7% Motor Neurone 7% Other Neurological 7% 9% 10% 10% 9% Dementia inc. Alzheimers 10% 11% 10% Heart Failure 18% 11% Other Heart / Circulatory 6% 7% 9% 18% Chronic Respiratory 21% 21% 5% Chronic Renal 7% 6% All Other Conditions 33% 21% 0% 5% Home Care 10% 15% 20% Hospice @ Home 26% 25% 30% 35% 40% Home Care & Hospice @ Home The proportions were similar in most categories, with a few exceptions. Combined services saw a higher proportion of dementia patients, and the hospice@home service saw more patients with motor neurone disease, chronic respiratory disease or heart failure. MDS Report 2010 – 2011 49
  • 50. Community Services Once again, the number of ‘All Other Conditions’ was higher than might have been expected, with over 30% of Home Care new patients in this category. Hospice@Home services recorded far fewer patients under ‘Other’ than last year. Table 29: Community Services diagnosis – conditions other than cancer Home Care Hospice @ Home Combined New All New All New All HIV / AIDS 9 13 0 0 2 3 Motor Neurone 431 744 111 134 174 304 Other Neurological 569 861 87 122 239 536 Dementia inc. Alzheimer's 500 565 117 118 267 292 Heart Failure 614 753 217 237 288 339 Other Heart Circulatory 407 583 65 77 222 304 Chronic Respiratory 1,084 1,558 252 308 525 712 Chronic Renal 301 382 79 91 140 165 All Other Non-Cancer 1,967 2,642 253 320 657 862 Total 5,882 8,101 1,181 1,407 2,514 3,517 Visits The average number of visits received by each patient during the year was calculated using the total number of visits made by the service divided by the total number of patients seen in the year. Overall this ranged from 0.4 to 13.7 visits, with a mean of 4.2 visits. Table 30: Community Services visits Average number of visits per patient Range of visits per patient per service Number of services responding Numbers in responding services 4.2 0.4 to 13.7 95 76,356 total patients 328,216 visits Contacts For the three years that we have collected data on consultations, the figures have varied quite widely. As with Day Care the response rate to this section also varied quite widely. Table 31: Response rates to contacts Face to Face Telephone Service Response Minimum Maximum Response Minimum Maximum Home Care 81% 16% 75% 76% 13% 72% Hospice @ Home 57% 0% 43% 43% 0% 31% Combined 79% 8% 54% 69% 10% 49% With the implementation of the Palliative Care Funding Review recommendations, this is a significant area in which services would need to record data. 50 MDS Report 2010 – 2011
  • 51. Community Services Home Care A total of 83 organisations providing home care supplied data on the number of consultations made by a health care professional. Both face to face (first and follow-up) and telephone consultations were recorded. • The total number of face to face contacts increased, as did the number of services responding • Both the number of services reporting telephone contacts and the number of contacts recorded increased • Clinical nurse specialists made up the majority of both types of contacts Table 32: Home Care contacts – face to face Health care professional Face to face contacts Max in unit Mean Median Services Medical Consultant 4,122 1.2% 100.0% 49.7 51.0 49 Other Doctor 4,015 1.2% 37.6% 48.4 36.0 42 Clinical Nurse Specialist 271,678 82.0% 100.9% 3,273.2 2,622.0 77 Other Nurse 19,445 5.9% 73.9% 234.3 60.0 33 Physiotherapist 6,098 1.8% 37.4% 73.5 127.0 35 Occupational Therapist 6,884 2.1% 42.7% 82.9 123.0 31 Social Worker 5,583 1.7% 83.7% 67.3 86.0 37 Pastoral / Spiritual Carer 1,528 0.5% 16.0% 18.4 14.5 24 Psychologist / Psychotherapist 1,442 0.4% 9.3% 17.4 65.5 16 Complementary Therapist 2,733 0.8% 11.3% 32.9 51.5 22 Other health care professional 7,894 2.4% 48.6% 95.1 40.0 32 Total Face to Face 331,425 – – 3,993.1 3,082.0 83 “Services” shows the number of organisations which reported at least one contact with each health care professional. • The number of services responding overall increased from 80 to 83 (+4%) • Contacts recorded increased from 301,653 to 331,425 (+10%) • Clinical nurse specialists showed the largest increase in recorded contacts, nearly 22,000 • Pastoral / spiritual carers had the largest proportional increase; nearly four and a half times the previous year’s number of contacts were recorded • Other nurses’ contacts also increased by nearly 3,000 • Having almost halved last year, contacts by other health care professionals increased by over 2,000 this year • Contacts reported by other doctors dropped by almost a quarter (-24%, 1,267 fewer contacts) MDS Report 2010 – 2011 51
  • 52. Community Services Table 33: Home Care contacts – telephone Health care professional Telephone contacts Max in unit Mean Median Services Medical Consultant 4,983 0.8% 34.8% 63.9 55.0 35 Other Doctor 5,181 0.8% 25.1% 66.4 33.0 35 Clinical Nurse Specialist 542,530 85.9% 100.0% 6,955.5 5,478.0 73 Other Nurse 19,912 3.2% 67.1% 255.3 182.5 34 Physiotherapist 3,818 0.6% 23.1% 48.9 106.0 27 Occupational Therapist 6,995 1.1% 64.3% 89.7 320.0 22 Social Worker 15,755 2.5% 95.2% 202.0 199.5 32 Pastoral / Spiritual Carer 1,117 0.2% 5.3% 14.3 20.0 17 Psychologist / Psychotherapist 1,217 0.2% 3.4% 15.6 53.0 13 Complementary Therapist 959 0.2% 6.5% 12.3 41.5 16 Other health care professional 16,885 2.7% 100.0% 216.5 22.5 30 Total Telephone 631,788 – – 8,099.8 5,656.0 78 “Services” shows the number of organisations which reported at least one contact with each health care professional. • • Contacts recorded increased from 596,708 to 631,788 (+6%) • 52 Services responding increased from 68 to 78 (+15%) Telephone contacts by social Workers was the only category which recorded a drop in contacts, from 15,987 to 15,755 (-1.5%) MDS Report 2010 – 2011

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