Just over a year ago, we received a personal health budget for my son. It has not been straightforward to set up, but after 18 years of struggling to manage his health and care needs, the end result has been transformative. As a result, I talk a lot about personal health budgets to pretty much anyone who will listen.
The most frequent comment from medical colleagues is that personal health budgets are fine for someone “like you” (presumably they mean educated, professional) but they are “too much” for many families. There are also valid concerns raised about governance around care staff and complex situations involving technical devices. Commentary in the media can be misinformed and occasionally offensive, suggesting that personal health budgets “take money out of the NHS,” “are privatisation by the back door” and the media report examples of people misspending their budgets. Here is my take on this, as someone on the receiving end.
Firstly, it is worth considering who receives personal health budgets and what the alternatives are. People accessing personal health budgets are mostly those that meet the criteria for NHS Continuing Healthcare These are patients who require a very high level of care, including people near the end of life, the most frail older people, and younger people with complex medical needs, such as brain injury or disabilities from birth. Without a personal health budget, provision is from a tendered agency, a residential facility, or is heavily reliant on family carers. None provide ideal solutions. Quality small scale agencies and residential facilities do exist, but agency care can be beset with a lack of consistency of staff, unreliability (people not turning up) and staff who may have basic generic training, but do not understand the individual needs of the person they are allocated to look after. It is not that surprising given that agency staff are often offered low wages, zero hours contracts, and visits are split awkwardly by time and geography. At best you are left with no control over who comes into your home to deliver care. For a short time this is tolerable. I experienced this with my terminally ill father, although the 30 minute time slot morning and evening was inadequate and impersonal. Over many years with my son this level of intrusion by strangers is hard to bear.
We accessed short break care instead which worked for a time, but this is expensive and there was pressure from a cash strapped social care system to reduce the hours. We stopped using the facility when the quality declined to the point that I had safety concerns, but we were left with no alternative. The year without respite as a single parent of a profoundly disabled teenager who required 2:1 staffing at school for hoisting and care, nearly broke me. We were still lucky in comparison to people who have suffered neglect and abuse in residential facilities.
Using a personal health budget to employ carers directly allows choice about who looks after your family member. For us it means six familiar care staff. They have good working conditions and we have invested in appropriate training. This seems to me to be the opposite of privatisation where private companies run large scale agencies or care facilities for profit. Personal health budgets are not about privatisation. The pilots started in 2009 under a Labour government.
Families do not have to take on the responsibility of being an employer and should be offered the option of third party support through a number of companies and voluntary sector organisations who can administer the budget, and deal with contracts, payroll, insurance etc. The budget can include an allowance for training, and grants are available. There is national guidance about the delegation of health care tasks. However, this information and the support that is offered is given to families inconsistently. This leads to the perception that personal health budgets are too onerous.
Some people enjoy the responsibility of managing their budget after years of disempowerment by health and social care systems, although this is not for everyone. Good results have been obtained for people offered budgets for end of life care, where it would be very easy to presume that a personal health budget is “too much” at this time, so we need to caution against paternalism. Interestingly when Warrington CCG offered personal health budgets for end of life care, no one chose to commission the end of life care previously offered and the self directed packages were also considerably cheaper.  So is ours (by tens of thousands of pounds) so hearing that personal health budgets are taking money from the NHS is not accurate and is also hurtful, when it is the most vulnerable people that receive them. It also feeds a hostile rhetoric against disabled people, as do the accusations of misspending. The vast majority of people are far more scrupulous with their budget than stretched public services who are remote from the day to day running where, for example, money can still be paid to agencies when carers have not turned up or money is spent on unsuitable equipment. Many of us have tales regarding wasted funds. Personal health budget spending is tightly audited. I have no doubt that there will be occasional misuse, but this does not mean the rest of us should be penalised or that the entire scheme is flawed.
This opinion may feel too personal for some people, but I guess that is the point. Until you have been on the receiving end of health and social care for long term complex medical needs, it is hard to understand the rationale and importance of PHBs.
Helen Leonard is a consultant paediatrician, a member of the NHS England Strategic Coproduction group and mother of three, with one son who has severe disabilities.
Competing interests: I hold a PHB on behalf of my son. I am a member of the NHS England Strategic Coproduction group. I have received a speaker’s honorarium through PeopleHub, which receives funding through NHS England, for talking about experiences of Personalised care.
- NHS England. Delegation of healthcare tasks to personal assistants within personal health budgets and Integrated Personal Commissioning. June 2017 Gateway Reference 06636