Memorandum submitted by Carers UK (DD
10)
ABOUT CARERS
UK
1. Carers UK (formerly Carers National Association)
is an organisation of carers run by carers. We represent the views
and interests of the six million carers throughout the UK. Carers
look after family, partners or friends in need of help because
they are ill, frail or have a disability. The care they provide
is unpaid. Carers UK provides information and advice to carers
and raises their needs and concerns with policy makers and service
providers. Our CarersLine responds to approximately 20,000 enquiries
annually.
REMIT OF
THE INQUIRY
2. Carers UK warmly welcomes the inquiry
into delayed discharges. Our recent research has demonstrated
that this is a key area of concern. Policies to reduce the number
of delayed discharges seem to be having a profound negative impact
on the health and welfare of carers and those for whom they care.
IMPACT OF
CARING ON
HEALTH
3. Evidence is growing which suggests that
caring has a profound impact on health. Work carried out on the
British Household Panel Survey showed that the health of carers
is more likely to deteriorate than improve over time compared
with non-carers.[1]
Other research has found that over half of carers providing substantial
amounts of care had sustained a physical injury since becoming
a carer. It also found that over 50 per cent of carers were being
treated for a stress-related disorder.[2]
The solution is to ensure that carers and the people they care
for receive adequate support. Qualitative data from another piece
of research suggested that positive health changes for carers
were linked to a variety of factors; service provision, sharing
responsibility with social services, having the support of a social
worker and reducing the number of hours spent caring. Understanding
the system better also helped.[3]
CARERS' EXPERIENCES
OF HOSPITAL
DISCHARGE
4. In June 2001, Carers UK published new
research based on the experiences of over 2,200 carers. This examined
whether good practice was being followed, evaluated change since
1998 and sought carers' views about what needs to change.[4]
We found that the proportion of people who had to be readmitted
within two months of being discharged doubled from 19 per cent
in 1999 to 43 per cent in 2001. The proportion of carers who felt
that the person they were caring for had been sent home too early
rose from 23 per cent in 1999 to 45 per cent in 2001.
5. Some carers reported positive experiences
and others negative. Many were full of praise for the dedication
of the NHS staff who treated their family member, partner or friend.
However, our research suggested that many carers were left to
cope in the community with unacceptable caring situations. 43
per cent of carers were not given sufficient help when the person
they cared for returned home. The comments from carers highlighted
extremely poor co-ordination namely:
— lack of consultation with the carer
about arrangements on returning home;
— lack of appropriate notice prior
to discharge;
— slow or complete lack of information
transfers to community health professionals, particularly GPs;
— services promised were never delivered;
and
— delays in providing essential equipment.
6. The proportion of carers who said they
were consulted fell from 71 per cent in 1998 to 64 per cent in
2001. The proportion of carers who said that their comments, concerns
or ideas were not taken into account increased from 36 per cent
in 1998 to 45 per cent in 2001. While a survey of 23 Trusts' policies
on hospital discharge found that the majority mentioned of the
need to involve a carer, this does not appear to be working in
practice.[5]
7. Only 20 per cent of carers received a
copy of the discharge plan in 2001 compared to 28 per cent in
1998.[6]
Even if the services detailed on the plan were not delivered,
carers still felt that it was important to have a copy of the
plan. The NHS will have a great deal of work to ensure that the
NHS Plan target around hospital discharge is met.[7]
8. Although the proportion of home visits
has increased from 21 per cent in 1998 to 33 per cent in 2001,
it does not seem to have been matched by adequate service delivery.
9. The proportion of carers assessed has
improved from 40 per cent in 1998 to 50 per cent in 2001. However,
given that nearly all of the carers in the study were providing
substantial care, they would have been entitled to an assessment
of their needs under the relevant carers' legislation. The recently
published Performance Assessment Framework indicators for 2000-011
show that the number of carers' assessments is low at only 21
per cent of all assessments.[8]
This supports earlier research carried out by Carers UK which
showed that only 21 per cent of carers had received an assessment
one year after the implementation of the Carers (Recognition and
Services) Act in 1997.[9]
REFUSAL TO
TAKE PEOPLE
HOME
10. Several of the carers in the study commented
that they had refused to let the person they cared for home. From
their comments it was clear that either they had poor experiences
before with lack of support and were not prepared to suffer the
same fate again, they did not feel able to cope or they did not
feel the person they were caring for was sufficiently well to
be discharged. Given carers' experiences set out above, and the
fact that over 70 per cent were not given a choice about taking
on the caring role, their concerns are justified. In the survey
of 23 Trusts, only 4 per cent of discharge policies specified
that carers should have a choice about caring.[10]
Some of the examples quoted by carers showed people being discharged
still bleeding, etc.
11. From carers' comments, it also appeared
that if a carer challenged a decision of a health or in-hospital
social care professional about a discharge decision, they were
seen as "difficult". When carers refused to take people
home because of concern about their welfare they were told that
the hospital needed the bed and they had to go. Others, being
concerned about making the right residential care placement, felt
pressured into making a quick decision they did not feel was right.
WHERE DISCHARGES
ARE DELAYED
12. A few carers were concerned that the
person they were caring for was kept for too long in hospital.
Of the couple of cases which were raised they tended to raise
issues around poor quality of care and the preference of the person
they were caring for who wished to be at home. These comments
were in the minority.
DISCRIMINATION: ETHNIC
MINORITIES, AGE
AND GENDER
13. We are particularly concerned about
the experiences of carers from ethnic minorities. Despite the
small number of carers from ethnic minorities in the survey, they
were less likely to be consulted, less likely to have their concerns
taken in account and less likely to be involved in the planning
process. Carers UK believes that Trusts should regularly review
whether their services and procedures are discriminating against
people from ethnic minorities.
14. Our survey did not find any evidence
of older people being treated less favourably than younger people
in terms of their experience of hospital discharge. Younger carers
were far more likely to feel that they were given insufficient
support, they were not consulted. They were also less likely to
have a carer's assessment than older carers.
15. Women were less likely to be involved
in planning the discharge (31 per cent of women compared to 40
per cent of men). 64 per cent of men said they had sufficient
support when the person they cared for returned home compared
to 54 per cent of women. Other studies have already indicated
that services make assumptions that women are more likely to provide
caring support. Carers UK wants Trusts to ensure that both men
and women who are or may become carers are treated equally.
CARERS AND
INTERMEDIATE CARE
16. Since the development of the NHS and
Community Care Act 1990, Carers UK has maintained that policies
which transfer patients and disabled people from a residential
setting into the community should not be at the expense of carers.
Our concern has always been that carers are seen as the cheap
and easy solution to community care. Carers provide the bulk of
community care to the tune of an estimated £34 billion per
year.[11]
Intermediate care has the potential to respond to many of carers'
concerns and needs namely:
— more integrated services;
17. However, it also has the potential to
place even greater demands on carers, by keeping in or returning
to much more severely disabled or ill people in the community.
Efforts must be made to ensure that this does not happen. Although
the circular on intermediate care states that carers should be
involved, consulted and assessed, we are concerned that this is
fully put into practice. We would suggest that any evaluation
of the intermediate care arrangements monitor the impact on carers
and gather their views.
GUIDANCE ON
HOSPITAL DISCHARGE
18. When the National Strategy for Carers
was published in February 1999, the document stated that discharge
guidance would be updated shortly and carers' needs would be fully
integrated. Government has responded through Questions in the
House of Commons that the Hospital Discharge Workbook will now
be updated rather than guidance issued and it would be published
soon. In the light of our research, Carers UK felt that both Government
guidance on hospital discharge needed an urgent review as did
the implementation of this guidance by Trusts. We also felt that,
given the poor implementation and lack of legislative basis around
hospital discharge (excluding mental health legislation), Government
should review whether legislation was needed to ensure that planning
for hospital discharge was conducted.
RECOMMENDATIONS AND
CONCLUSIONS
19. From our evidence we have concluded
that several courses of action are needed:
— at a national and a local level an
evaluation of whether strategies to reduce the number of delayed
discharges from hospital are resulting in carers being left with
inappropriate support;
— a consideration of whether legislation
to underpin planning for hospital discharge;
— an assurance that NHS Trusts would
update and revise policies at Trust level and ensure that they
fully integrate carers' needs;
— better quality assurance from Trusts
to ensure that policy is delivered in practice;
— closer joint working between health
and social care, including more co-ordinated services;
— services, which are promised, are
delivered promptly;
— quality assurance around service
delivery;
— a significant improvement in the
number of carers' assessments; and
— urgent address of the shortfall in
service provision following discharge from hospital.
January 2002
1 Hirst, M; The Health of Informal Carers: A Longitudinal
Analysis, Working Paper, DH 1563, Social Policy Research Unit,
University of York. Back
2
Henwood, M; Ignored and Invisible? Carers' experience of the
NHS, Carers National Association (now Carers UK), 1998. Back
3
Arksey H, Hepworth D and Qureshi, H; Carers' Needs and the
Carers Act: An Evaluation of the Process and Outcomes of Assessment,
Social Policy Research Unit, University of York, June 2000. Back
4
Holzhausen, E; You Can Take Him Home Now; carers' experiences
of hospital discharge, Carers National Association (now Carers
UK), June 2001. Back
5
Hill, M and McGregor, G, Health's Forgotten Partners, How
carers are supported through hospital discharge, Carers UK,
October 2001. Back
6
You Can Take Him Home Now, op cit. Back
7
Standard states, "we will introduce new standards to ensure
every patient has a discharge plan including an assessment of
their care needs, developed from the beginning of their hospital
admission." NHS Plan (2000), Department of Health, paragraph
12.9. Back
8
Social Services Performance Assessment Framework Indicators,
2000-2001, Government Statistical Service and Department of Health,
October 2001. Back
9
Holzhausen, E, Still Battling? The Carers Act One Year On,
Carers National Association (now Carers UK), June 1997. Back
10
Health's Forgotten Partners, op cit. Back
11
Nuttall, S. R, et al, The Costs of Informal Care, Institute
of Actuaries, 1993. Back
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