Is a Holistic View to Care the Way Forwards?

Yesterday’s article on how some of the four thousand Personal Health Budgets users are spending tax payer’s money to manage their own care needs is yet another stark example of media and mainstream establishments tarnishing all disabled people with the same brush. For starters, let’s put this into some perspective – we’re talking about less than 0.05% of the disabled population in the UK.

In summarising what had been “uncovered” with monies spent on, at no point did it detail what warranting needs had been identified for those users. It’s entirely plausible a housebound user may have needed a games console as their only meaningful method of getting much needed exercise. Do the same complaints arise when lava lamps are used with learning and other mental disability treatments? I don’t think so.

As Simon Duffy said, PHBs make up a tiny percentage of NHS spending and are assessed and approved by health professionals at every stage. The idea isn’t entirely new either. A predecessor “Personal Budgets” allowed users more flexible and creative with their care plans. The article makes no mention of how difficult it is to even qualify for a Personal Health Budget as things stand, currently only those with severe needs ranging in the 24 hour care requirements even come close to having a sniff.

Given the overall amount of NHS spending I fail to understand why The British Medical Association says it has reservations about the inappropriate use of “scarce NHS money”. This the same body that only as recently as March this year announced regional funding pots for assistive technology to help users live independently in their own homes. If £250 worth of horse riding lessons is giving their balance sheet the yips, the NHS really is more screwed than we all thought.

There were many reasons why I agreed to move onto a Personal Health Budget. Like many, the Direct Payments scheme was too restrictive for my needs and required greater flexibility within it. Many may scoff at over £2000 spent on aromatherapy, but again there is little or no follow up detailing what effect this has had on the users in question. Thankfully I’ve had aromatherapy creams free of charge from my doting mother, allowing me to half the number of spasm tablets I need to take each day. That may not sound like much, but the cumulative effect has been massive, particularly as all have drowsiness as a major side effect.

In the last year, I’ve spent an equivalent amount on physiotherapy – anyone who knows me will tell you I haven’t done so in a decadent or frivolous manner. Without it, my muscles were seizing daily, I wasn’t sitting straight in my chair, often in considerable pain. Relieving that discomfort would often require my PAs to move me several times a day, tiring for them and for me. By the end of a day I would be exhausted, falling over to one side, unable to socialise after work if I wanted to.

When asking for my needs to be met, I started with one hour’s physio every fortnight – I know, how cheeky. Again it doesn’t sound like much, but the level of neuro speciality my injury requires doesn’t come cheaply – minimum £50-60 per hour, which no-one on benefits can regularly afford. After a year it was doubled to a whopping two hours a fortnight. My physio documented the benefits of her work, and the additional time would allow for more functional stretching and movements that might re-enable some of my own independence.

The cumulative effect over a year has been remarkable. I sleep better, sit straighter for longer in my chair, generally have less pain. I can reach for more things in my immediate vicinity without having to call a PA EVERY time because my range of movement has increased. I can stand for double the time I used to, which is good for my body, posture, internal organs and preventing calcification (i.e being shaped like a chair for the rest of my life). Am I being over the top with what I’ve asked for, particularly when over successive years the NHS has deemed I’ve not needed physiotherapy at the point where I left hospital in 1999? Ask anyone in my position, including stroke victims such as Andrew Marr, how regular physio would benefit their ongoing wellbeing.

Yes my budget has increased by 37% on my previous Direct Payment. Most of that covers an improved hourly rate for my PAs reflecting the work I ask them to do. Care is not a minimum wage job, and without an increase even inline with inflation from April 2010, asking them to do healthcare related tasks would have been unreasonable without such compensation. Why am I asking them to do these? Simple. I need more flexibility in my daily life where I cannot rely on a district nursing service to visit me every other evening. They are chronically understaffed, covering larger areas and service user caseloads, often leaving my regular visits being left to ungodly hours of the night or sometimes not even happening at all – making any sort of daily routine or “normal” lifestyle impossible.

Let’s not forget PHB users employ a large number of people across the country, which the government so obsessed with employment statistics seems to so frequently and conveniently forget. From a service user perspective PHBs put us on a level playing field with the rest of society, acknowledging that the imposition of disability comes with additional costs. Disability is not a choice – I’ve yet to meet anyone who would voluntarily “acquire” one simply to jump to the front of the queues at Disneyland or ask the taxpayer to foot the bill for having their moat cleaned.

Why shouldn’t disabled be able to enjoy holidays as anyone else? Some may have never been on holiday at all. Not all will insist on a trip to the Bahamas each year, some may be just as happy with Butlins instead (other destination chains also available). Given they need care, many are unable to work and earn a salary as ordinary Joe Public. Even if some like myself can work they face additional costs that Joe Public never has to worry about – taking a carer, hiring medical equipment and accessible transport. These aren’t “nice to haves”, they’re necessities without which the service user cannot survive.

At my three month review I asked for a holiday allocation to be written into my care plan. Based on my last holiday in Florida (2008 FYI!), a two week holiday came in at around £3000. The offer I pitched attempted to reasonably balance what my budget covers against what I would normally expect to pay for a holiday myself if I were yet another Joe Public.

It worked out as a 50/50 split if I paid for my own ticket, accommodation, food, entertainment and cattery costs for my beloved furballs, with my PHB covering my PA’s ticket, accessible transport and any medical equipment I’d need to hire from a local company whilst I was there. This approach I felt covered everyone involved fairly, I wasn’t exploiting my budget and would only use it to go on holiday whenever I would have normally been able to afford to go myself as a non disabled person. £1500 is a lot easier to afford than £3000! If you can find any part of that which is being unreasonable, I’d be equally amazed and interested to hear your point of view.


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