Losing the physical self

After almost eighteen months, I finally go forward!My balance is much better, I use my arm and I walk with a frame! About bloody time! My speech and writing are better and I transfered myself to the toilet myself today. Nothing is easy any more, for thirty years plus I could walk effortlessly, now I can’t stand up! and try going to the toilet when your left side is useless, not easy! I can’t just nip to the loo when I want, I have to wait for my Carer in case I fall, then transfer from my wheelchair to the toilet, having positioned myself first, then I struggle to pull my clothing. Try taking your pants up and down while sitting on the toilet and your left limbs are no help, I tend to crash around a lot at this point and other people are tempted to help me, but they mustn’t as I won’t get better, but its very tempting and I couldn’t watch anyone struggle if I could help!

So I am sat in the garden in the heat, the cat has just walked past and looks very cheesed off and Howard is watching the Open golf!

I am not someone who ever really had strong political leanings, like most of us in this country I believe politicians are hardly talented managers, but bit part actors and after dinner speakers. However I can honestly say that I hope I have developed much more of a social conscience as a result of recent experiences. Anyone who spends time in hospitals, and has to deal with, and rely on health and social services is bound to take an interest in how it impacts on peoples lives. I am now aware that there are people out there suffering not just as a result of brain injury, which is bad enough, but how they are supported and treated by the public sector. My experience has opened my eyes to just how difficult life can get but with the impending election in mind wouldn’t it be great, if by voting, we could actually make a positive impact on this situation.

Apparently 17 million people in the UK have long-term conditions and it is well document that this group has traditionally been neglected. The National Service Framework (NSF) for Long Term Conditions was launched in 1998 and demonstrates an attempt to improve things in this area. That seems like a long time ago and you wonder how long it takes to really improve things. With only quality requirements and no plan to address the serious shortage of neurologists and nurses, no apparent way of measuring progress and a 10 year implementation plan, it is difficult to see any major impact from the NSF.

The government has a policy to enable people to leave hospital earlier and be supported in their own home. Looking at the costs to keep Anita in rehab, this makes financial as well as emotional sense because of the very long rehabilitation process. However at the moment, it seems she has had to accept less treatment and poor coordination of services as a result of making that choice. When you add that to the government view that they want people to return to work and add in the cost of long term care for a 40 year old woman then if there is any chance at all of making her more independent then it makes sense to maximize the situation. An area like health rehabilitation appears to have less weight than that given to areas such as education and sports centres of excellence. That is an absolute disgrace, because people who choose to improve themselves after such a devastating injury should morally be given every opportunity to do so. The negativity, lack of service and organisation in rehabilitation is an absolute disgrace. How can I support this government when it’s unlikely she will be fully supported in her wish to reach her potential!

I have looked at the Labour, Liberal Democrats and Conservative manifestos to see if any provide answers, but none are any real help. When making your vote there is a choice of either showing discontentment with the present government or positively seeing another party can make things better. There are some positives in the labour directions in the health service, and you wonder if the real responsibility for change belongs with senior management in the NHS. Whatever the case, at the moment there seems that there is a very long way to go before they use the good quality caring staff at the bottom to there best effect. I find it hard to stomach voting but will vote liberal democrat mainly because they will stop the injustice, to many disabled people, of charging people for their own long term care. My own plea to any government would be to please, please, please train and employ more neuro physios.

I have recently come across the governments ‘National service framework for people with long term conditions’ and discussed it’s implications with someone who was very helpful from the neurological alliance. Our experience’s so far have taught us that having brain injury is not just impossible both physically, mentally and emotionally but many of the procedures you go through and the lack of high standards you see can leave you banging your head against a wall. Therefore any government initiatives in this area are of direct interest to me and Anita. The government is to be applauded for such initiatives however it’s probably only as a result of the pressure brought to bear by organisations such as the neurological alliance.

From our perspective we will have to see how these quality guidelines are implemented in practice! Personally I still feel that the government is long on initiatives but short on the resources to back them up. One particular rant that I have is with regard to the lack of neurophysios in this country. How can you get people to make independent recommendations when they are fully aware of the resource implications. You can read more about the NSF quality requirements.
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Now that Anita is home the importance of getting the right amount of physiotherapy for her (amongst other things) is crucial.
We are still awaiting the assessment from Rayner’s Hedge on her therapy needs before the local authority can come up with a treatment plan. Judging by what I have seen of the resources for neurological physiotherapy in Milton Keynes I have severe doubts that Anita will be able to continue her current level of improvements. That frustration has already led me to write a letter to the local MP. In it I have stated our aims:-

1. For Anita to achieve maximum independence.
2. To make life easier for people with brain injury in the future.

The government has spoken of getting brain injured people back to work, promoting independence and is trying to change the culture of brain injury. The definition of rehabilitation is…

Rehabilitation has been described as a process of active change by which a person who has become disabled acquires the knowledge and skills needed for optimum physical, psychological and social function. The aims of rehabilitation services are to help people to maintain their existing roles in the family, at work and in the community, to improve people’s physical functioning and to prevent or minimise loss of function in the future.

From the experience of Anita’s rehabilitation we have come to realise that this definition has not been fully demonstrated in practice. Even worse, that rehabilitation will be further limited by the lack of neurological physiotherapy services in MK. I have included more extracts from the letter in the extended entry.
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Before I go any further I would like to say thank you to Anita’s physio’s and that I appreciate what they have done to help my sister. But for the rest of you����.

After 10 months in Rayners Hedge my sister Anita finally signed herself out – to say she was depressed is an understatement.

Rayners Hedge is a rehabilitation facility for brain injury patients. My sister was assigned to this facility in Aylesbury because there were no facilities available to her in her hometown of Milton Keynes. My sister’s rehabilitation team consisted of an occupational therapist, and physical therapist, and a psychologist.
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There was another family meeting on the 1st February and pretty much the whole meeting was now about Anita’s discharge from Rayners Hedge. I would have thought that such a process could be demonstrated with a flow diagram and a checklist to sign-off. If such things exist then I have yet to see them. For over the last 4 months I have continually stated that Anita will need to continue her specialist neuro physiotherapy when she goes back home to Milton Keynes and I have not yet received a satisfactory answer. When Anita moved hospital even though Milton Keynes is a large city she had to go to Aylesbury to get the necessary services she needed. That fact alone has always made me a little sceptical of what can be provided on her return. I think there could be a shortage of services in Milton Keynes! I have sent a letter to various staff voicing my concerns, you can click on the link at the bottom of this post to read it.

It’s a simple fact that no one knows just how far Anita could progress but if her physical therapy is drastically cut then it’s obvious it won’t help. All the government policies talk about the importance of independent living and getting back to work yet it is an extremely sad fact that it is not backed up with resources.

I have grave concerns that the system can encourage you to give up and not make the most of the potential you may have. The desperate desire for Anita to return home is set against her desire to improve her movement. It’s even sadder that my stand on this issue has caused Anita to remain in hospital because it’s not nice to be there for 15 months but it’s still the best place for her. To replicate the physio she gets at Rayners hedge at home would cost around 250 pounds a week so it would be interesting to make a cost comparison with her stay in hospital! If she becomes independent in the future the savings for the cost of her care over 30 years would be considerable.
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Today’s family meeting mainly discussed Anita’s period at home over Christmas. The staff wanted her to be at home for a period of 2 weeks. They think it will do her good because she has been in hospital for such a long period. We voiced concern over her not having any physio over this period. The physio didn’t think it would affect her adversely although it was suggested that I carry out a predetermined programme with her. They think there will be lots of benefits such as increased motivation and an improvement in her psychological wellbeing. She will be home from 17th December. There will be carers from an agency in the morning and evenings, apart from Friday and Saturday evenings. It will give us the opportunity to test things at home.

We also talked about the recent prognosis that the doctor had given (she would see no functional improvements in her arm and leg). They gave me the impression that they agreed with me in that we would see improvements. I asked if she couldn’t have some kind of device for her leg that would mean she could walk but the physio thought not. A difficult problem at home will be that if she can’t walk then just how she is going to move around.

I also asked if it would do Anita any good to be in a different hospital. I have this feeling that there is always something more I can do for her that I am missing out on! Since her prognosis we wondered if the staff had given up. She was told this was not true and that she would not progress any better at another hospital. They see the approximate date for her discharge around March. Although we are desperate to move on from the hospital I remain to be convinced that she will continue her progress at the same rate with the services offered in the MK community. I will question the MK side of things much more to find out what they will do for her.

Family meetings are basically important discussions that take place around every 6 weeks. They are an opportunity for me and Anita to talk over her progress with the staff. As well as the staff from the rehabilitation hospital it is also attended by a social worker and brain injury specialist from Milton Keynes. Each specialist area reports on how Anita is progressing including Psychology, Speech and Language Therapy (SALT), Nursing, Occupational Therapy (OT) and Physiotherapy.
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