Losing the physical self

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.

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.

During my recent illness and subsequet struggle to recover, I have not been contacted once by my so called relatives! My parents and sister have been great. as has my huband, but my relatives have not contacted myself or my husband during all this horror. They may not like my Mum, but that doesn’t stop them contacting me direct. They found out somehow that I was ill and stopped my Dad in the street and even then didn’t ask about me, just berated my Dad for not telling them about me! Even when all this was happening, their first thought was the effect on them! I just wish they would leave my parents alone! All this nastyness as well as the brain injury is unbearable.

My parents were burgled while visiting me dying in hospital, so I hope somebody reads this and feels guilty! No doubt they will get their karma back, but I would like to see it!

If you watch this video of Anita making a few steps with me and the quadrapod you can see Anita’s balance problems. Because her brain can’t get the juice to her left leg it fails to support her so she tends to fall front left. For a long time she improved, practicing planting her left foot in the correct position, but you can see she still doesn’t always get it right. She has been walking like this for a long time, to improve her balance she will need a great deal more work. Anita has now been out of rehab for exactly 2 months and in that time I have noted she hasn’t made any progress in her movements at all. Even though Anita has had some physical work from me and her family it has been very difficult to keep her going in the right direction. Now more than ever I know that what she has done so far is largely as a result of the therapy sessions she had attended in rehab. For Anita to achieve more freedom she needs to be more mobile, more safely. This week I had to answer an alarm call at work because Anita tried to transfer herself to the toilet and fell to the ground at home. Below are some thoughts on patient potential.

Patient potential

The message from the rehab unit was to forget walking, focus on other things and get on with life. Although walking may be an unrealistic prospect, you have to be careful with what you accept because you know that doctors know very little about the brain and others like Michael Watson have proven them wrong. You have to listen to the advice, try to be dispassionate and make your own mind up. Walking is not the biggest issue but independence definately is.
One of the most upsetting things I am having to come to terms with is that most brain injured people will never reach their physical potential:-

• The overall experience of the injury and the chemical changes in the brain can de-motivate the patient.
• There would never be enough physiotherapy over the long term to support maximum recovery.
• If the rehab unit mixes too many different medical cases it’s unlikely to have the right culture.
• All possible range of therapies are not explored.
• Apart from physical improvements brain injury throws up lots of other important issues and problems that have to be dealt with.
• Not everyone is as keen on exercise.

I am fully aware that few people in life reach their full potential. However is it wrong to ask for more when this isn’t simply reaching higher in your career but just to be able to have a shit in dignity!

Yesterdays visit to Stoke Mandaville hospital offered the chance for Anita to have squint surgery on her eye. This involves tightening muscles behind the eye, it will help her appearance and prevent any double vision problems. On the photograph you can see the muscles on top of the eye. These are at the top and bottom of the eye and also on either side. She has previously had an operation for squint surgery that worked on the muscles either side of the eye. Therefore this time they would have to operate on the ones that are top and bottom to straighten it.

The problem is that every time they operate on each of these muscles it can effect the blood supply to the eye through them. Because Anita will have had all muscles worked on there is a risk that the blood supply to the eye could be affected. This could cause a lack of supply leading to problems, potentially a loss of sight. You can see from the second photograph how much anita’s eye is turned in. It also demonstrates the two previous operations, a gold weight in the eyelid and plastic surgery on the lower lid.

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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Recently there has been a plethora of things to do and these have included various medical things to sort. Anita went through a bout of serious depression last week that had to be seen to be believed. I don’t know how many of these we can both withstand but the bloody minded fighter in both of us means that we may see how deep things can go. Because Anita returned from 2 weeks holiday at her mums, this period after hospital discharge was always going to be a difficult one. There are so many things to sort out and I seem to be using a lot of leave from work. Anita’s discharge has resulted in a long period without physio but it’s now starting to stoke her desire to continue. I can only hope that once all of Anita’s health and social care is in place it will get easier.

There was a visit to a neuro rehab doctor to enable better co-ordination of services but seemingly no better idea of responsibility. Anita has got so many things wrong with her that like many other brain injured people she spends a lot of time at medical establishments. Everyone knows that it can be a pain with hospitals but you have to multiply that in her case. Today she had to go to Stoke Mandaville to address hearing difficulties, she is on the border of needing a hearing aid or not. Apparently it could also help with her tinnitus but it looks to be the start of many more visits. Contacting the local doctors is starting to become a pain also. On occasions it can take up to 45 mins to get through on the phone to set up an appointment. There are various things going on that we will have to look at regarding her depression.