A cleaner, home internet access, taxi services and even a baby monitor are just some of the things carers in Crawley have spent their health budget on. Jennie Musgrove and Dr Amit Bhargava explain
Compared with the role of carers in other long-term conditions, those looking after someone with dementia are particularly vulnerable because they themselves are often elderly and frail. Dementia is a disease that becomes harder and harder to manage. The stress of caring for someone with dementia is huge. And if the carer becomes hospitalised through ill health, the person with dementia may also be hospitalised because they cannot be left alone.
Carers are worth £167m to our local health economy, and it would be blinkered for commissioners to overlook them. The things that can prevent a carer becoming isolated, and help them feel supported and manage stress, can often be very small. Yet individual needs can be very different. The idea behind personal health budgets is that they help carers to maintain their own physical, mental and social wellbeing so they can continue to cope in the vital help role they provide.
What we did
West Sussex was selected as a pilot site for personal health budgets. The pilot – covering Crawley, Horsham and Mid-Sussex – began in 2009 as a partnership between the NHS and the Carers Support Service, a local charitable carers organisation, and is due to end in December 2012. Our budget has been £35,000 a year for three years, and from the outset we decided eligibility and how much budget a carer would receive should not be determined by any specific constraints.
This was to avoid unnecessary bureaucracy becoming yet another barrier to promoting a carer's own wellbeing and because the amount of budget would not warrant the transaction cost of assessment.
The only criterion in place was that the person being cared for had to have been diagnosed with dementia within the previous two years, as our objective was to support carers who were looking after someone in the early stages of the disease.
We aimed for 20 carers, but we have ended up with 23 who have been given a personal health budget of £500 each a year.
This target was altered from an initial suggestion of £1,000 for 10 carers to stretch the funding between more beneficiaries.
Carers can be referred by their GP or another health professional, or a support worker, or they can self-refer. Initial publicity was by way of a simple flyer – you can see a version of the flyer at practicalcommissioning.net.
The support worker has an initial meeting with the carer to talk about what their health is like, what needs they have and how they would use a health budget.
The carers make their own decisions about what they need to help their physical, mental and social wellbeing, but with help from their support worker. We have found this one-to-one support is just as important to the carer as the budget itself. The carer's proposals must be set out in a simple support plan, which must be approved before they spend the money. There is no risk of an overspend as planned expenditure is discussed with the support worker, so we can oversee and monitor the process and the correct draw down of funding.
Transport is a common request, so patients can get out and about more easily. Also popular are leisure activities, such as swimming, exercise classes or hobby classes. Carers often ask for internet access in their homes. One lady wanted to buy a baby monitor so she could hear if her husband got up in the night. Another carer asked to buy a television, which was approved because it was agreed it would go a long way to reducing their isolation.
The support worker builds up a relationship with the carer and is a source of advice and information about local services. As well as allocating the budgets, they can advise on benefits carers might be entitled to, and encourage them to address legal issues and access information about dementia itself.
We decided that for a few carers with complex situations and at risk of hospital admission themselves, we are going to increase their budget to £1,000 for the last few months of the pilot.
We have been very focused on including people from black and minority ethnic groups, but this has not proved hugely successful, largely because of cultural issues. There is a stigma around mental health – the expectation is that females automatically cope in the caring role and that £500 per year was not enough to justify engaging in the pilot. It was also hard for some carers to accept help or even accept they might need help. We have three carers in the pilot from black and minority ethnic groups.
One of our recommendations will be that a budget of £1,000 is more realistic to make a difference. The bureaucracy must stay at a minimum and the process of signing off budget requests must remain simple. It is such a small amount of money, there is no point having lots of governance. Carers involved are honest and work to the spirit of the programme. They really make every penny count.
There will be a full evaluation overseen by the local steering group when the pilot ends in December. Initially we had thought of using annual health checks as a measure of health, but this has not really worked.
Some carers were reluctant to have them, some struggled to access them and we also decided we wanted to look at the overall picture of wellbeing – physical, social and mental. So instead of annual health checks, we will be conducting structured interviews with the carers to ascertain the difference the personal health budget has made.
We will also be monitoring admissions in the small group of high-needs carers who will be eligible for the £1,000 budget.
We have had very positive feedback. Carers do feel more empowered and more able to cope with their role. The majority are more active both physically and socially. We have also seen that contact with the support worker has been as important to them as the budget itself.
It is clear to us that personal health budgets would not work without a dedicated support worker role as carers and patients do need support in making choices and even recognising what their needs might be. The budgets have been spent on very simple things – leisure classes, social groups, transport, internet access, cleaners and equipment to help people in the home.
It is such a small amount of money, if you save two bed days for one person you have broken even. For example, we have an 89-year-old looking after her husband who was able to be discharged from hospital much earlier than he had been on previous admissions because she felt more confident and supported in looking after him.
Local commissioners await the evaluation of the pilot with interest. We feel there is definitely a place for personal health budgets for carers of people with dementia – it is a potentially large return for a small investment. How much the budgets should be and how they should be managed remains open to discussion.
It will be important to be open-minded in how we measure the value of the pilot – the social value to carers, in areas such as independence, should be given just as much weight as physical and mental health.
Jennie Musgrove is chief executive of the Carers Support Service, North and Mid-Sussex
Dr Amit Bhargava is clinical accountable officer for Crawley CCG and national co-lead for the NHS Alliance clinical commissioning federation
Initiative Personal health budgets of £500 per year for carers of people with dementia
Start-up costs The pilot received a budget of £35,000 for three years from the Department of Health
Staffing One support worker to help carers plan their budget (employed by the Carers Support Service for 20 hours per week)
Savings To be determined
Outcomes Anecdotal feedback suggests carers are more physically and socially active. A full evaluation will be published at the end of the year.
Contact Jennie Musgrove, email@example.com