Writer and Consultant on Carers' Issues
Following a career in education, Judith became a writer and carer in 1999. She writes regularly on caring issues for a variety of publications and is advisor to the government's Standing Commission on Carers. Judith is Carer Lead for the RCGP National Pilot "Supporting Carers in General Practice"
PROFESSOR NIGEL SPARROW
Chair, RCGP Professional Development Board
Deputy GP Dean
East Midlands Healthcare Workforce Deanery, NHS East Midlands
Visiting Professor of General Practice Lincoln University
A GP in Nottingham, Nigel chairs the RCGP partnership with the Princess Royal Trust for Carers, which produced the Good Practice Guide for Carers. He is also a member of the Standing Commission on Carers
It is widely accepted that unpaid carers provide services worth in the region of £87bn per year – almost the equivalent sum of a second NHS.(1) It is therefore important for primary healthcare teams to ensure carers are effectively supported to stay in good health. After all, it is only common sense that if the carer falls ill either through physical or psychological illness, healthcare and social services support will be required for both the carer and the cared-for person.
This is the premise behind a shared educational initiative between the Royal College of GPs (RCGP) and the Princess Royal Trust for Carers (PRTC). The result is Supporting Carers, a practice-based action plan for GPs and their teams, which was distributed to every GP practice in England during summer 2009 and followed up with a series of regional RCGP workshops.
The distribution of the action guide and the workshops were supported by funding from the Department of Health (DH). Although numerous GP surgeries do provide a valuable resource to the carers in their patient population, the workshops highlighted vast differences in the amount, and quality of, carer support available. This not only depended on the attitude and degree of involvement in carers' issues of individual practices, but also the level of communication between health and social service professionals with local voluntary organisations. The purpose of the workshops was therefore to raise awareness of carers' needs.
When the PRTC polled carers about what areas of support they would like from a GP surgery, it was no surprise that recognition and appropriate information came top of the list. But in addition, carers mentioned guidance on welfare benefits and financial matters.
Although practice staff cannot be expected to offer such advice, the doctor's surgery is the obvious gateway to other services and support that carers can access. Indeed, it is this role of signposting that perhaps only a GP team can undertake. Which other professional service will a carer regularly contact?
However, to begin directing carers to support services, there first needs to be a method of identifying the 10% of patients who fall into this category.(2) Most practices maintain a list of carers, but few are kept up-to-date or register more than a small percentage of the carers in the patient list.
Following the Supporting Carers practice guide needs to be a team decision, but it is usually the practice manager who will roll out the action plan and nominate an appropriate member of staff to take on the role of Carers Lead. This person is then guided in how to bring together the global knowledge of the practice team using different approaches and administrative tools to support the carers in the patient population.
Initial implementation of the plan may be laborious, as identifying carers can be a difficult and sometimes delicate task. If a carer is identified during health checks or on registration, the Carers Lead needs to be informed on diagnosis of specific illnesses (for example stroke, diabetes, MS, dementia), hospital admission or discharge. Of course, many carers do not identify themselves as anything other than a loving spouse, son or daughter, and proactive means of encouraging people to recognise their role within the family is required. This may be through leaflets and posters in waiting rooms, partnerships with local carers support services or illness-specific charities.
Links with local schools may help identify young carers, who are often reluctant to admit to being carers or who are unaware of their situation. Many youngsters are born into families affected by health, alcohol or substance abuse problems, where caring for a parent or sibling is a normal part of daily life. Despite a register of 175,000 carers under 18 years of age, with 2.5 million children living with an adult suffering from a mental health problem, there are bound to be many more that remain hidden.(2,3)
Different GP surgeries will discover different methods to help identify and support their carer population. But, ideally, the Carers Lead will complete the Self-Assessment Checklist, included with the Supporting Carers pack, with the practice team annually.
On a day-to-day basis and with the patient and carer's consent, the Carers Lead keeps a carer's contact details on the relevant patient's notes and records their status on their own notes. Confidentiality issues about permission gained for information sharing with the carer should be addressed, with clear notation for all members of the team.
Equally, it should clearly be noted if there is information that should not be shared. Where the patient does not want information shared, the Carers Lead should ensure that general information on relevant health conditions is available to the carer.
The Carers Lead is also the main contact point between the practice and local carers' services, keeping colleagues informed with carer support developments locally as well as nationally. Regional carers centres may help update surgery noticeboards with information for patient carers. Some carers' centres and Citizen Advice Bureaux are keen to run carer information clinics in GP surgeries with advice on access to welfare benefits and support.
All carers over the age of 16 are legally entitled to an assessment by the local authority. This informs everyone, including the carer, of the amount of work and expertise required as well as what support may be available. Although the carer's assessment can be undertaken even if the cared-for person doesn't want any help from social services, it will often be carried out at the same time as a patient's care assessment.
Carers' own health neglected
As well as not accessing services that could make their lives easier, carers also take scant regard of their own health problems – despite having increased all-cause mortality and morbidity.
There are many reasons why carers neglect their own health, including being unable to leave the home for appointments or treatment. Nevertheless, of the 1.2 million carers who care for more than 50 hours a week,(2) 25% report back and muscle strain, 33% report depression and 50% have disturbed sleep.(4) And if carers don't focus enough attention to their own health needs, primary care teams need to encourage a change of attitude and thereby avoid future crises developing.
Using Read codes or other electronic forms of identification, a patient's caring role can be signalled to all practice team members and taken into consideration for appointments or referrals. Also, when treating the patient, the carer needs to be seen as an expert partner in the patient's care. This is not out of a sense of duty but because the carer will know more about their loved one's specific condition than any health professional.
Supporting carers in your team
Finally, it needs to be remembered that as well as being health professionals, general practices are also employers and it is likely that at least one member of staff is also a carer. This may be the ideal candidate to become the Carers Lead – but offering a carer-friendly working culture, including a written policy on supporting carers, is invaluable to all.
With growing numbers of carers, it is probable that something similar to the Supporting Carers checklist will become integral to practice policy. In addition, the RCGP is developing a scheme of accreditation called Primary Medical Care Provider Accreditation (PMCPA), which includes organisational domains important for developing a carer-responsive practice.
PMCPA is a voluntary accreditation scheme for primary care providers. The focus of the scheme is continuous quality improvement in standards of patient care. The scheme has been developed and piloted by the RCGP in partnership with the National Primary Care Research and Development Centre (NPCRDC) at the University of Manchester.
PMCPA consists of a two-stage process with a total of 88 criteria: 51 in Stage 1 and 37 in Stage 2. Each criterion is supported with evidence required and has been mapped to Care Quality Commission registration requirements. PMCPA focuses on organisational, rather than clinical, issues and is based on six domains:
However, looking after carers is already in the primary care team's economic interest, as they bear the brunt of the additional support required when a carer reaches crisis and can no longer carry on.
1. Carers UK. Real change, not short change: time to deliver for carers. London: Carers UK; 2007.
2. 2001 UK Census.
3. Department of Health. Women's mental health: into the mainstream – strategic development of mental health care for women. London: DH; 2002.
4. Summerfield C, Babb B (eds). Social Trends 33. London: TSO; 2003.