Losing the physical self

39 pages, box after box, reiterating your disablement over and over again. What a pleasure it must be for disabled people to fill in a claim for Disability Living Allowance. It also something you have to do every year, like filling in a tax return! Yes I know you can use help lines and get support from social services, but how many hours are spent going through these forms. Surely it can be simpler than this, particularly if you have a major disability and it’s not as if there are more important things to do, is it?

The work to convert our garage into a living space for Anita was recently completed. As time has gone on it was getting more important to create a space suitable for her. Having a bed in the lounge for so long was just to uncomfortable. We decide to let the Bedford branch of the Garage Conversion Company take the strain of doing the development. They did an excellent job and made the whole thing look easy. It was a little uncomfortable for a while having them digging up our garden but now it’s done it’s a fantastic space. Realising we would never get any government funding to do the work we had to bite the bullet and get it sorted. It’s not something we would have chosen to do previously but now it’s done I can see the sense in doing a conversion, we all use our small garages only to store rubbish anyway. The conversion costed us around 13.5k and we did save some money on the VAT relief. You are allowed zero rated VAT but only on the installation of the bathroom which counted no more than 5% of the overall cost.

During the conversion there was various visits from OT’s so that they could input into the layout. The bathroom was made a little bigger and the toilet centred on the room. They supplied drop down handles for the sides of the toilet. I have learned that the positioning of everything is very important and can be quite difficult to determine because it all depends on how Anita will transfer herself in the future. I would urge people doing something similar to make sure that they give this some thought. The shower and sink where fitted low down so that it was best for Anita and now she has been able to have a shower for the first time in ages! Without the shower she would have only ever been able to wash herself in bed which is not very nice.

You can see the full photo set of the conversion on flickr.

I am sure most people reach a stage when they want to look in detail at what actually happened medically to their nearest and dearest. There is always the question of ‘why it happened’ but it’s unlikely we will ever really know why Anita suffered a cerebellar pontine angle bleed, leading to brain damage, after a simple operation. I can fully understand how some people become obsessed with medical information after such an occurrence like some unsolved crime. For various reasons I have recently begun for the first time to at least think about what happened in Addenbrookes hospital. Anita’s medical notes from that period number well over a thousand pages, an ample novel for those in pursuit of forensics.

As a means to educating myself on the operation I have just read a medical journal on the lessons learned from 4400 Microvascular Decompression operations that talks through operation technique. It is an American article and I confess I am not totally clear on the differences in technique from country to country. On reading, it appears to follow the same procedures that Anita’s OP followed. The article draws out some useful statistical analysis on the complications of the surgery.

Of the 1,995 operations performed since 1990, cerebellar injuries declined to nine cases (0.45%)

Anita would fit into this category and if you add in the further complications she has also suffered and the damage done it put’s her in a very unfortunate, small, statistical group. Looking at the positives, it backs up the reason to have the operation. You should never ever have regrets in life, but as I type, and I hear her disturbed, brain damaged sleep ramblings, I wonder why it’s always the special people that get the hardest time.

In the early stages of Anita being in hospital I found comfort in being around people who had chosen a caring profession over a commercial one. I actually enjoyed being around the hospital because our day to day lives are surrounded by so much stuff, there is tremendous energy around and we don’t have time for our fellow human beings. The hospital was calm for me because all I had to think about was how much I loved Anita, what a great time we had enjoyed together and that there was nothing else in my life that mattered except the moment. At that time I had no barriers between me and the staff that where treating Anita. As time passed the experiences I gathered has made me treat Anita’s medical wellbeing much more like a job. This attitude has been forged from my experiences thus far and sums up my current relationship with the NHS. I feel sad that I can’t feel like I did but I would be sadder still if I look back thinking I didn’t make the effort. After all there will be plenty time to retire later.

It is with this in mind that I have written a letter in response to a discharge report that we recently received. I was unhappy with the report for a number of reasons but mostly I just want to see a better quality of service from the NHS for her.

For almost as long I have been writing this blog I have been striving to get Anita as much therapy as possible. The issue that has stood out for me most during Anita’s rehabilitation has always been the impact physical therapy has had on her progress. The saddest realisation for me is that to go home you need to accept a reduction in this therapy. I have set out my arguments in a letter responding to this report, to read it click the link below.
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Anyone who knows anything about brain injury and disability doesn’t need to be told how difficult things can be. One of the difficult things for patients and relatives to get to grips with and sort out is any benefits or entitlements they should be getting. It has become apparent to me that many people miss out on their entitlements. With this in mind I have added a checklist of information to the useful section of the website, most UK based people should do themselves a favour and work through this list. I will add some more information later about paying for carers.

What is most galling to me is that the worst affected are the most vulnerable in our society. Those that have suffered brain injury that haven’t got people around them in their time of need. I know that the government support systems can be a help but it is fragmented and differs depending on where you live. Not only do people have to cope with the injury but they are expected to fill out DLA forms and much worse after a major life change find their way through a complex set of options. All this when they are already at braking point.

I think that the goverment wesite directgov is a very good step forward but being a web design professional with the user utmost in my thoughts I have to ask myself if it’s not possible to ask people to input answers to a few questions then tell them what they need to do. It’s simple interactivity based on the premise of giving each individual a different response, it’s what the web is good at!

I have been told by my sister that Anita should have been receiving incapacity benefit because she is only on half pay at work. I should have been sent an SE1 form to fill in back in May after she had been off work for 6 months. Apparently incapacity benefit comes into force after you have been incapable of work for more than 28 weeks.
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