Select Committee on Health Minutes of Evidence

Memorandum submitted by Carers UK (DD 10)


  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.


  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.


  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]


  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]


  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.


  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.


  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.


  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;

    —  rapid response; and

    —  rehabilitation.

  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.


  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.


  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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