I didn’t know the term “carer” when I first became one in 1999, but I soon felt the effects of isolation, anxiety and depression that are commonplace when looking after someone else long term. Caring for my young adult daughter, I felt I had fallen into a parallel world where my tedious role lacked definition and was merely a necessary extension of parenting. I wrote about my experiences in the Who cares? column for Society Guardian and was subsequently invited on to the inaugural Standing Commission on Carers set up by the last government. With a rapidly ageing population, it realised that the nation’s army of unpaid carers was integral and required support to continue its vital work.
It is estimated that one in three adults will become a carer in the next 10 years, with over 20% caring for more than 50 hours a week, and most doing so without outside assistance.
Like me, many carers don’t think of themselves as such, yet if they are unable to cope, it could lead to an emergency situation, with the person they care for having to be admitted into hospital.
A survey released next week for Carers Week will show that many carers are indeed buckling under the strain. However, evidence suggests that when carers are supported early in their role, crises can be avoided.
The GP surgery is the obvious place to identify and signpost carers towards appropriate services, but historically it has been difficult to engage doctors with the issue of carer support. Their role was to look after the sick patient not the person caring for the patient. I had frequent contact with my GP’s surgery about my daughter’s illness, but didn’t consider that my own health was relevant.
In recent years, though, I have witnessed first-hand how doctors have come round to acknowledge the importance of supporting carers. This is particularly the case with younger family doctors, who recognise that by helping carers, everyone benefits: the person being cared for, the carer and the primary healthcare team.
Win-win situation
Dr Sachin Gupta, a GP in Welwyn Garden City, is typical of this new generation of GP. He says: “By keeping carers healthy we can reduce referrals to secondary care and hospital admissions. This is a win-win situation for GPs, carers, the people they care for and the NHS. I came into this profession to make a difference to the lives of people and this is a great opportunity to do so.”
Gupta is one of an initial group of nine GPs who have been recruited regionally by the Royal College of General Practitioners (RCGP) to champion the needs of carers. They work with liaison workers from the charity network Carers Trust and carer ambassadors from Carers UK to strengthen local links between GP surgeries and support services, and to share best practice.
When I became involved with the RCGP four years ago in an initiative funded by the Department of Health to support carers in general practice, it was already working with the Princess Royal Trust for Carers (now Carers Trust) to produce an action guide. My role, along with two practising GPs, was to use the guide’s material in a series of nationwide workshops for primary healthcare staff to demonstrate the benefits of engaging with carers.
At the first workshop in Hertfordshire, where my GP colleague knew several of the participating doctors, our presentation was welcomed. A fortnight later in Lancashire, the reception was quite different, and doctors were adamant that the last thing they needed was the additional burden of carers. Surely, they argued, carers were the responsibility of council social care services, not the health service. This became a common theme during subsequent workshops, particularly from older, male GPs.
But by generating discussion through a series of case studies, we always succeeded in demonstrating the mutual benefit of identifying and supporting carers. After all, it is the carer who carries out the doctor’s recommendations and knows the patient better; by recognising the carer as an expert partner in the patient’s treatment plan, the doctor has a valuable aid, we argued.
Since 2008, each workshop has taken us a step closer to breaking down the divide between primary care staff and carers. Much of the support that carers need cannot be provided by the GP practice, but, once identified, a carer can be signposted to appropriate services. To this end, many practices now appoint a carers’ lead – a member of staff who facilitates the identification of carers and acts as a conduit between the GP surgery and local services. As well as Carers UK and Carers Trust, there are other agencies that offer carer support, including Age UK and Action for Children as well as illness-specific groups. Service provision varies widely but carers’ leads have contact with what is available locally.
In Worcestershire, a county-wide GP-based carer support service launches next week following a successful pilot in three areas. The service was commissioned and will be provided by Worcestershire Association of Carers, which will place carer support advisers within surgeries, providing one-to-one support for carers and signposting them to appropriate services. There will be 6.5 full-time advisers working across 68 GP practices.
Issues with capacity
Helen Garfield, project officer at the joint commissioning unit at Worcestershire county council acknowledges that the service may have issues with capacity. She says the money awarded by the primary care trust and managed by the three Worcestershire clinical commissioning groups also has to enhance the services that carers will be referred to.
“We have expanded our 24-hour phone information and support helpline for carers, and increased our flexible breaks service, which will allow more carers to receive up to four hours per week replacement care. It was a delicate balancing act,” she explains, between funding the advisers and building the capacity of countywide services that could experience a huge rise in demand.
The scheme was showcased at a national carers’ conference in Birmingham earlier this year at which I was pleasantly surprised to hear care services minister Paul Burstow talk as though he genuinely believed in the imperative of better support for carers through primary care.
Let’s hope this isn’t just talk, because more is needed, including designated financing for regular health checks for carers. Although available in some areas, health checks are not routinely offered despite research suggesting that carers experience increased mortality. Carers neglect their own health needs in favour of those they care for, resulting in a high prevalence of depression and muscular strain along with a greater risk of many physical illnesses including stroke.
There is still a lot for primary healthcare teams to learn, and many of the GP champions are new to post, but the enthusiasm from this predominantly young group of doctors is encouraging. As Becky Steed, a GP champion from Nottingham, says: “For every person with a long-term physical or mental health condition there is almost certainly a carer too. If we can recognise their needs as well as the person that they care for, we can help to safeguard their health and hopefully make life a little easier for all concerned.”
If such positive attitudes had been evident when I was looking after my daughter I might not have felt so marginalised or impotent. Instead, I might have recognised that being her carer as well as her mother was a dual role, and important.
• Carers Week is 18-24 June. Details at carersweek.org
