Several years ago I visited Baroness Jane Campbell in hospital to help draft a speech that was to be delivered on her behalf by Baroness Tanni Grey Thompson on the occasion of the launch of the Joint Committee on Human Rights inquiry report on the right to independent living. Baroness Campbell was a member of the JCHR at the time and had spearheaded the inquiry which centred on how well UK law and policy was advancing disabled people’s right to be the authors of their own lives.
In the same ward at the time was a young man with the same condition as Jane: ‘Spinal Muscular Atrophe.’ He had had an emergency trascheotomy. We sat and listened to his story and included it in the speech.
Prior to being admitted to hospital the young man had used direct payments from his local council to fashion a full and active life. He had is own place to live, ran his own business and had a steady girlfriend. But now his ‘needs’ no longer fell into the box marked ‘social care.’ His trascheotomy meant he required continuing ‘healthcare.’ However, unlike social care, direct payments were not (at the time) permitted in relation to healthcare. He would no longer be able to direct his own support, or choose who supported him. This would be down to the Primary Care Trust (PCT). The PCT’s preference was for the young man to live in nursing care. The young man’s preference was to go home and resume his life, which he was ready to do after one month of being admitted to hospital. The resolution took six months, during which time he ‘lived’ in a high care unit, with no contact with the outside world, listening to people struggling to breathe, and quite often listening to people die. He lost his business and his girlfriend. The avoidable cost to the taxpayer of his elongated stay was £250,000. The avoidable cost to him was incalculable.
That one story exemplifies why I support personal health budgets. Where our lives pivot on continuing healthcare it must do more than just keep us alive. It must be designed to support us to live our lives to the full.
Peter’s main line of argument is that, as pursued by this Conservative Government PB’s and PHB’s must only exist to implement spending cuts and privatisation and hence must be rejected. At the same time he claims to support direct payments, introduced by John Major’s Conservative Government in 1996. However, when this morning a person put to him that local authority direct payments were too problematic to be used for older people ‘lacking capacity’ and had ‘no place in the NHS’, rather than challenge their argument he replied ‘PBs directly undermine the universalist principles of the NHS which is why this govt likes them’. Another person tweeted to ask whether the ‘PB question (is) separate to the Bill to set upper limits NHS treatment free at point of use ?’ to which Peter replied ‘good point sounds like policy pushing in same direction’. The only problem being that no such Bill (or policy) exists.
In truth, personal health budgets neither herald rationing, or the involvement on non-public entities in the arena of health.
‘Universal’ healthcare does not nor has it ever meant ‘unlimited’ healthcare. The NHS has finite resources which are already targeted. The NHS does not charge those who benefit from its services, which is what distinguishes it from social care, but that does not mean it operates a ‘blank cheque’ policy. In this sense, what personal health budgets offer is a degree of transparency hitherto denied about what is spent on our care and how the money is spent. It is in all of our interests to prevent the sort of huge waste outlined in the case above and personal health budgets can help achieve that.
As for ‘privatisation’, the NHS already spends £billions procuring products and services from businesses and voluntary sector organisations, including drugs, medical equipment, food, wheelchairs, digital hearing aids, aids and equipment, nursing care, research and so on. It frequently does so via block commissioning, having little regard to the individual needs and preferences of patients.
What PHB’s can restore- to a relatively small number of people who require continuing health care because of the complex nature of their impairments and ongoing interaction with the health system – is control over day to day life. In keeping with the UN Convention on the Rights of Persons with Disabilities this includes control over where and with who to live, over who provides support and how they provide it, over the kinds of products one has in one’s home and so on. In doing so PHB’s invite people to be partners, rather than simply objects, in relation to their own health and wellbeing.
In short, as with personal budgets, personal health budgets aim to expand opportunities for independent living. I’m unclear why Peter doesn’t support them, but then he does have a book to promote……