Improving Health Services for Carers

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1 Improving Health Services for Carers A carer is someone who, without payment, looks after or provides help and support to somebody who could not manage otherwise due to age, physical or mental illness, addiction or disability. The census tells us that there are 5.8 million carers in the UK. 1.2 million of those carers care for more than 50 hours a week more than a full-time job. By comparison, although the NHS is the largest organisation of its kind in the world, it actually employs less people than the number of carers in the UK. This document summarises the work being done by The Princess Royal Trust for Carers to improve health services for carers. Why should health services identify and support carers? Carers are partners in the provision of health care to those they care for. Supporting them is a sound investment in continuity of care. Carers are patients too and research has shown clear detriments to the health of those who take on a caring role particularly where the caring role is substantial. There are other resources available. Carers referred to voluntary organisations can receive a range of support services which may have a considerable impact on their lives and ability to continue to care. Carers referred to the Local Authority for an assessment can gain access to additional support in their caring role reducing the extent to which they may need to rely on health resources. Carers and current policy The Government agenda to reduce inequality and promote social inclusion has meant an unprecedented number of public policy drives aimed at the most deprived and excluded in our society. Carers specific needs and circumstances are now being highlighted and addressed with various implications for government agencies and statutory public services. Our health, our care, our say The White Paper released in January 2006 offered a new direction for community services and a new deal for carers. Carers are considered frequently throughout the paper, which responds to a large scale public consultation. More help for carers ranked as the third top priority for participants at the Citizen s Summit and the White Paper has responded well to this demand. The most encouraging aspect of the White Paper for carers and those who represent them is the pledge for a new deal for carers, which encompasses a range of specific initiatives that recognise their bespoke role and needs, including: Information service/ helpline for carers Emergency respite care Expert Carers Programme An updated National Strategy for Carers Direct payments Life Checks

2 Carers and the NHS To date, the NHS has perhaps underestimated the benefits it derives from the contribution of family carers. They provide vital care which keeps people out of hospital as far as possible and have individual expertise in the needs of the person they look after. The National Strategy for Carers (1999) identifies the NHS as being the most important contact for carers and in particular primary care services as an important initial point of contact. Primary care professionals are well placed and have a vital role to play in identifying local carers and their needs and in pointing them in the right direction for support. The Community Care (Delayed Discharge) Act 2003 allows NHS Trusts to enforce a charge against Local Authorities where they have not facilitated the discharge of patients who are ready to leave hospital care. It also poses a shared duty of care on professionals to consult with the carer and with social services when discharging patients. National Service Frameworks (NSFs) have set up long-term strategies for improving specific areas of care. The key role for carers is embodied in all the NSFs, especially Mental Health, Older People and Long Term Medical Conditions. National frameworks are now being developed for commissioning, provision and regulation. Policy makers and the health service need to consider the involvement of carers when developing strategies to adequately reflect carers needs in design and delivery. Many NHS organisations already have carers leads in place and all are encouraged to do so in the White Paper. Their role should be properly utilised to ensure that carers are engaged with and supported by all statutory services. The Carers (Equal Opportunities) Act 2004 includes a duty for NHS services to co-operate and give proper consideration to requests from Local Authorities for health service support for carers. This is reiterated in the National Standards, Local Action planning framework of 2005/06, which centres on dignity, respect and partnership. Health service professionals are encouraged to engage carers in planning and improvements and treat them as individuals.

3 The Princess Royal Trust for Carers working with Health Primary Care The Princess Royal Trust for Carers Network of Carers Centres has developed considerable expertise in working within primary care to identify and support carers. There are more than 51 initiatives within the Network working with primary care services. The work of these initiatives has brought benefits to thousands of carers by connecting them to sources of support and information, often at the time they most need that help. The work also helps to raise awareness of carers among GPs and primary care professionals. Training and awareness sessions have been run for hundreds of primary care staff. Primary Care Project The Primary Care Project, supported by GlaxoSmithKline, combined and developed this expertise and good practice to produce two reports (Primary Carers and, subsequently, Best Practice, Better Practices) and an internal toolkit looking at supporting carers via primary care services. Best Practice, Better Practices Report This report contains a review of good practice, and findings from a detailed analysis of three demonstration projects across England. The report concludes with important recommendations about extending this work much more widely within primary care. The recommendations show how Primary Care Trusts can lead this agenda. They can use local protocols and local contract negotiations to encourage and support the work to identify carers, refer them to sources of support and establish clear systems of evaluation. The report also offers a list of suggested action for Government, the Department of Health and Strategic Health Authorities to support the work at commissioning, auditing and operational levels. Work at the practice level to support carers is unlikely to become embedded in all areas unless there is support and encouragement for this from both the local PCTs and the Government and SHAs. Without this, development is always going to be patchy and inconsistent, and largely driven by local enthusiasts and champions. Accordingly we have produced 10-point checklists for both PCTs and the Government and SHAs.

4 A checklist for GPs and Primary Health Care Teams 1. How many of your patients who are carers, and patients who have a carer, have you identified? Are you implementing all of the methods for carers identification outlined in the report? 2. Do you refer carers to local sources of advocacy, help and support, including an assessment by the Local Authority and Carers Centre or carers support groups? 3. Do you take carers special needs into account in terms of the way you allocate appointments? 4. Do you take carers particular home circumstances into account in your procedures for issuing prescriptions and for home visits? 5. Do you take carers particular needs into account in your arrangements in the waiting room? 6. Do you check carers health whenever a suitable opportunity arises, and at least once a year? 7. Do you ask patients who have carers whether they are happy for health information about them to be told to their carer and do you give carers information about the diagnosis, treatment and prognosis for the person they care for and about medication and its side effects? 8. Do you arrange for your staff to have information and training to make them carer aware and to ensure that all relevant practice systems and protocols reflect the needs of carers? Will you identify a member of staff to take the lead on carers issues? 9. Are you willing to actively encourage the involvement of local Carers Centres and carers organisations in the work of your surgery? 10.Will you use the opportunities presented by practice based commissioning to develop services and support for carers? A Checklist for Primary Care Trusts and Strategic Health Authorities 1. Do you produce a local protocol for systems within primary care to identify carers and link them to support, and do you commission work to set up such systems within primary care? 2. When monitoring the implementation of QOF Management Standard 9 relating to the identification of carers, will you examine the numbers of carers identified as well as the process? 3. Do you involve carers representatives, as partners, in the planning of local services? 4. Do you make assessments of the level and quality of support for carers provided by the primary care services that you commission and do you incorporate support for carers into your local protocols for clinical governance and GP and practice appraisals? 5. Do you use the flexibility in PMS contracts and the options for enhanced services in the GMS contract to encourage and reward GPs to extend and improve services for carers? 6. Do you commission services to support carers from a local Carers Centre or other voluntary of statutory agency? 7. Do you include carer awareness in the training you offer to members of Primary Care Teams and encourage practices to have a carers lead? 8. Do you include carer awareness in the training for your own staff, members of the PCT Board and Professional Executive Committee? 9. Do you ensure that the needs of and services for carers are considered by the partnership with the Local Authority and other agencies? 10. Do you ensure that the needs of and services for young carers are included in strategies for children's services?

5 A checklist for the Government Simplyhealth Caring Awards 1. Will you strengthen the system for performance managing and rating PCTs to give clearer recognition to the importance of providing support for carers and introduce a statutory duty on PCTs to promote the health of carers? 2. Will you ensure that Non-Executives appointed to the PCTs include people who can demonstrate an understanding of carers issues? 3. Will you strengthen and widen the requirement to identify carers and set a new date by which GPs, members of Primary Care Teams and Social Services staff are asked to identify carers in line with the national priorities guidance issued in September 1998? 4. Will you ensure that all relevant National Service Frameworks include a standard relating to the recognition and support of carers? 5. Will you consult widely and ensure flexibility in the implementation of the Expert Carers Programme heralded in the White Paper? 6. Will you set targets for the establishment of carers health checks in primary care? 7. Will you ensure that PCTs and Local Authorities are funded to improve and extend support and services for carers in primary care? 8. Will you ensure that there is funding to introduce pilot programmes to identify the most effective ways of improving carers health, and to encourage the development of carer-friendly services in primary care? 9. Will you run a national publicity and awareness raising campaign to encourage carers to identify themselves as such to their GPs? 10. Will you introduce into legislation the proposals contained in Barbara Keeley s Bill to require GP practices to take the needs of carers into account in the provision of their services? The Simplyhealth Caring Awards look to celebrate and showcase the great work carried out by GPs and their surgeries to support family carers across the UK. Surgery Award This is the chance for surgeries to show what they are doing to support carers in their local community. This year winning surgeries could secure up to 2,000. Carers Choice Award These awards give carers the chance to say thank you to their local GP surgery who have helped to enhance their life with the work they do. This year s prize is 250 each for the family carer and the winning GP. Out of Hospital Project This project will continue and extend The Trust s work on health looking particularly at the area of hospital discharge. There will be an initial mapping and research phase, followed by Trailblazer projects which will try out methods of improving referral rates and highlight the challenges. These will be evaluated as to method, and also to demonstrate the outcomes of carers support on discharge. Project supported by

6 Carers In Practice Partnership with the Royal College of General Practitioners The Carers in Practice initiative is a two year partnership between the Royal College of GPs and The Princess Royal Trust for Carers. The aim is to offer GPs best practice guidance on carers issues so that patient-carers can receive tailored support. The partnership, endorsed by the Institute of Healthcare Management, the Royal College of Nursing and the Stroke Association, will also seek to identify hidden carers - individuals who in providing around-the-clock care will often see themselves as simply 'looking after someone' but who in doing so will usually miss out on benefits. The two year initiative will also provide a GPs toolkit to assist training. This follows a successful partnership with The Royal College of Psychiatrists, Partners In Care. Visit: Professionals Website The Trust has recently launched a brand new website for Professionals, a three-year project sponsored by Legal and General. The site launched with information for health professionals, with key information on primary care and hospital discharge, and will be expanding into social care, government authorities and education over the next three years. This is the only bespoke resource of its kind on the internet and should prove to be a driver in improving joint working between professional bodies and The Trust's Network of Carers' Centres. Supported by: Improving Health Services for Carers There has been much learned already about how to identify and support carers in primary care. It is important that we continue to learn from existing projects and to build upon the progress already made, and above all to translate this learning into real and permanent change in services. Only in this way will the commendable aspiration of the latest White Paper to give a new deal to carers become a reality. The recommendations in Best Practice, Better Practices are a key step towards giving carers the support which is in the interests of the NHS to provide and we commend them to decision-makers at every level. The Carers In Practice partnership and the Out of Hospital project will build upon these recommendations and the good models of practice to help us make the forgotten army of carers a recognised, valued and supported army within health and social care.