Celyn Vincent and the problem of invisibility

Picture of Celyn VincentThis morning the papers reported that Riven Vincent, the mother of a daughter named Celyn (pronounced Kellin, Welsh for holly — and some newspapers thought the public was too stupid to process that, so they just called her Holly) who has cerebral palsy and epilepsy, was considering putting her into care as she was no longer able to cope with the round-the-clock care she needs. Riven had challenged David Cameron before the election in a Mumsnet question-and-answer session, whereupon it became clear that Cameron was unaware of how many nappies the NHS had supplied for his own severely disabled son per day (the amount seems to be 4 a day in most places, generally regarded as inadequate). There is a statement from Riven here and an article by another mother, with an 18-year-old daughter with quadriplegic cerebral palsy, on the difficulties in getting assessed for the social and personal care she is entitled to.

David Cameron clearly capitalised on the sob story of his own son Ivan, who also had cerebral palsy and epilepsy (specifically Ohtahara syndrome), and died aged six in 2009. Cameron claimed that caring for Ivan “sharpened [his] focus on the world of care assessments, eligibility criteria, disability living allowance, respite breaks, OTs, SENCOs, and other sets of initials” but insisted that he was not a carer; “the work that full-time carers or those with little extra help do is unbelievable”. However, one can assume that the Camerons had the money to pay for outside care for Ivan, which is not always the case for parents on average incomes who have severely disabled children, or adult children. Caring for a relative full-time by necessity requires someone not to work outside the home if the relative is disabled in the same manner as Ivan or Celyn (if they are someone like Stephen Hawking, a carer could also assist them in their professional activities), which means a family is likely to be plunged into poverty by losing one earner to become a carer (particularly in this day and age, when more families have two earners). I must say that it is quite odd that there are significant differences in what care different types of severely disabled people can access; Victoria Brignell (a quadriplegic, with a spinal cord injury) is able to live on her own, funding personal care and assistance through NHS direct payments, while Kay Gilderdale, whose daughter Lynn was totally bedridden with severe ME, got very little assistance.

The last few years, politicians’ class has appeared to lose relevance, and the fact that someone went to a posh “public” school (“public” schools are élite private schools, not state schools as in the USA) and Oxford or Cambridge, or comes from an aristocratic family or is very rich is no longer something we are supposed to hold against them, even though it may put considerable distance between them and the realities facing ordinary families. There are a lot of politicians in the Conservative party who come from fairly ordinary backgrounds and went to state schools, but the likes of David Cameron and George Osborne spent most of their post-university careers in politics or in media (and in Tory-friendly media at that). Struggling to survive is not something either of them have had to deal with, and neither of them has ever run a business.

How will situations like this be resolved? Of course, the easy way for a politician to do it is for a short-term intervention to help this particular family, or others in more or less this exact situation, but which will not last very long, and the next time they are in need, the media will have some other business to attend to. The problem is that it takes a lot more money to care adequately for disabled people, particularly those with particularly severe disabilities, in care homes because their entire care needs to be funded, along with heating, lighting, cleaning etc. which would normally be covered under household expenses, as well as administration staff, along with infection control which is increasingly a problem in institutional, medical settings. So, leaving mothers like Riven Vincent to fend for themselves without help is a false economy, even before we consider the fact that institutional care is often demeaning, it separates the disabled from their families and friends, it makes them vulnerable to cruelty, the fact that staff may run the treatment for their own convenience and forget their individual needs (e.g. tube-feeding residents who take too long to eat). We should also not forget that all the facilities which used to house the severely disabled long-term have been destroyed or sold off; if this kind of care is to become popular again, new buildings will have to be built. Properly funding home care looks like an increasingly attractive option.

The reason carers often find themselves in the situation of Riven Vincent is essentially that long-term care has nothing like the headline potential that acute care and matters like the provision of cancer drugs do; we commonly see media campaigns when the healthcare regulator blocks a drug which can extend a cancer patient’s life by a few months, but it is rare that this issue makes headlines. Those with disabilities are not always as able to mobilise as able-bodied young people (like students) are, particularly those with long-term debilitating illnesses like ME, and even so, recent experience shows that public demonstrations often have no political effect. This visibility gap was, of course, well in place before the present Lib-Con coalition took power, but it is already known that maintaining disabled people’s standards of living, regardless of their ability to work (or find an accessible workplace), is much less of a priority to this government than cutting the deficit — and making the ideologically-driven cuts for which the deficit provides a handy excuse.

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