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!

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.

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.

Quality requirement 1: A person-centred service
People with long-term neurological conditions are offered integrated assessment and planning of their health and social care needs. They are to have the information they need to make informed decisions about their care and treatment and, where appropriate, to support them to manage their condition themselves.

Quality requirement 2: Early recognition, prompt diagnosis and treatment
People suspected of having a neurological condition are to have prompt access to specialist neurological expertise for an accurate diagnosis and treatment as close to home as possible.

Quality requirement 3: Emergency and acute management
People needing hospital admission for a neurosurgical or neurological emergency are to be assessed and treated in a timely manner by teams with the appropriate neurological and resuscitation skills and facilities.

Quality requirement 4: Early and specialist rehabilitation
People with long-term neurological conditions who would benefit from rehabilitation are to receive timely, ongoing, high quality rehabilitation services in hospital or other specialist settings to meet their continuing and changing needs. When ready, they are to receive the help they need to return home for ongoing community rehabilitation and support.

Quality requirement 5: Community rehabilitation and support
People with long-term neurological conditions living at homeii are to have ongoing access to a comprehensive range of rehabilitation, advice and support to meet their continuing and changing needs, increase their independence and autonomy and help them to live as they wish.

Quality requirement 6: Vocational rehabilitation
People with long-term neurological conditions are to have access to appropriate vocational assessment, rehabilitation and ongoing support, to enable them to find, regain or remain in work and access other occupational and educational opportunities.

Quality requirement 7: Providing equipment and accommodation
People with long-term neurological conditions are to receive timely, appropriate assistive technology/equipment and adaptations to accommodation to support them to live independently, help them with their care, maintain their health and improve their quality of life.

Quality requirement 8: Providing personal care and support
Health and social care services work together to provide care and support to enable people with long-term neurological conditions to achieve maximum choice about living independently at home.

Quality requirement 9: Palliative care
People in the later stages of longterm neurological conditions are to receive a comprehensive range of palliative care services when they need them to control symptoms, offer pain relief, and meet their needs for personal, social, psychological and spiritual support, in line with the principles of palliative care.

Quality requirement 10: Supporting family and carers
Carers of people with long-term neurological conditions are to have access to appropriate support and services that recognise their needs both in their role as carer and in their own right.

Quality requirement 11: Caring for people with neurological conditions in hospital or other health and social care settings
People with long-term neurological conditions are to have their specific neurological needs met while receiving treatment or care for other reasons in any health or social care setting.

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.

Extracts from letter to the politician

Anita has just returned home from Rayners Hedge rehabilitation unit, we where disappointed to find that given the size of the population in MK we still had to travel to Aylesbury for 10 months. However the 10 months of 1 hour daily physiotherapy she received has improved her to the point that she can almost make her own transfer’s. It is not unconceivable that if she continues at this rate she will gain a certain amount of independence. As a forty year old woman reducing the amount of social care she needs will be a considerable long term saving to the tax payer. Particularly if she can also return to her employment at the council. I am writing to you at this early stage because I fear that what therapy she will be offered will not even come close to matching what she has been getting previously. I feel the need to demonstrate to you the potential personal tragedy that lack of service can have on peoples lives.

MK has only two neurological physiotherapists working 3 days a week, given it’s size and the increasing incidence of brain injury it’s not enough. We feel this will impact on how much she will get and there is no way she will be able to progress at the same rate she has done in hospital. The argument is often made that it’s not just about physiotherapy but that her road to independence lies in adapting to her home environment and self-exercise. I understand those arguments, those things are easily done but with conditions like proprioception I have seen the direct results that she has achieved with constant movement and regular physiotherapy. We met with Anita’s neurosurgeon yesterday and he agreed that Anita is still at the stage where improvements will be made. We are desperate to get 5 days physiotherapy 1 hour a day, but the only way to achieve this is to pay a private physiotherapist at a rate of £50 per hour. It’s likely we will have to shoulder the cost of adaptations to our home which will soon include the large expense of converting our garage. I am frankly disgusted that the NHS are prepared to carry out these operations but won’t meet their obligations in the aftermath.

We are currently looking very hard ourselves and with the local NHS representative from the Physical Disability Resource Team to see if there are possible solutions. The difficulty of brain injury for the person and the relatives is enormous; it is beyond the scope of this letter to talk about most the obstacles that get in the way. The experience I have gained so far shows me that there is a lot that can be done to help people, people who are much more vulnerable than us, these are some of the most vulnerable members of our society. You can be assured that the points I am making to you in this letter will be made at every opportunity to others who could be of assistance or should be made aware of the circumstances. If there is any way that you can help us we would be grateful if you could contact us at the earliest opportunity.

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.

Over the ten months my sister has been receiving treatment at this facility she has made improvements. She has gone from having no movement in her left side to gaining some use in her left hand and arm and being able to stand, and take a couple of steps with help. In the first hospital Anita had braces/splints on her left arm and hand and also on her foot to keep them straight. These devices were supposed to be on for two hours and off for two hours� Was this done, no it was not. I know for a fact that when I was there with my mum we did it and when Howard was there he did it. I guess the nurses figure they don’t have to do their job if a family member is visiting.

Since being at RH my sisters therapy has consisted of writing exercises, and facial exercises (which she does on her own), but her main objective has been the HOPE of walking again. With this in mind, her physio’s have worked hard in getting Anita to stand and walk. And as of today, all of their hard work has paid off and Anita can stand and can take a few steps with the use of a quadrapod and assistance.

It has recently been brought to my attention that the neuro doctor of this facility had been contacted by my sister’s employer who wanted a prognosis for my sister. This doctor told the employer that is was unlikely that Anita will make significant functional improvements. If that is the case, then why have the physio’s in this facility spent ten months and worked so hard in getting my sister to stand and walk? Are they incompetent? No, I think not. I think these therapists do think Anita has the possibility of walking again� It may take years, but the hope was still there. To take away someone’s hope can demoralize a person. That doctor took away my sister’s hope and crushed her confidence. And why can’t she work? Anita has a physical disability at the moment she is not brain dead! And how dare he imply such a thing. Anita is perfectly capable of working� it is up to her whether she wants to or not.

During the last ten months Anita has had ‘counseling’ sessions and the therapist has been trying to get Anita to accept the fact that she will be in a wheelchair and it is something that Anita has to come to terms with. That’s all fine and dandy for a therapist to say, but this therapist doesn’t know my sister. My sister is one of the most independent women I have ever met and to take away her independence is the worst thing anyone could do. Telling my sister she needs to accept a wheelchair is not being realistic. And if this therapist had taken the time to get to know my sister she would know this.

In all honesty, I don’t think RH has been a positive experience for my sister or for any of us. Anita’s husband Howard has had to fight tooth and nail to get Anita the therapy she is entitled to, which is more stress than he or my sister needs to deal with. This facility has not been supportive of Anita’s physical needs and it has not provided my sister with any emotional support (apart from antidepressants). I think this facility has done the bare minimum for my sister and nothing more.

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.

Letter dated 7th February 05

I am writing as a follow on to the recent family meeting we had on the 1st February 05. I was informed subsequently that after this meeting you have given Anita a possible date for discharge, the 11th March. Although there are many things that need to be put into place (such as a care plan) before discharge the scope of this letter is to address only the issues that I have real concern about. I thought it was also important to reiterate my understanding of the due process that will need to be carried out before discharge.

From the family meeting my understanding is that before discharge the following steps, with regard to her physical therapy, need to happen:-

• Anita must have a written needs assessment that should show amongst other things the recommended level of physiotherapy and type of programme she should continue.
• We should be given enough time, if we are in dispute with this assessment to go through PALS or other means to seek an independent view.
• We should meet with the staff at the Bletchley therapy unit.
• A clear Rehab programme and timetable of therapy in Milton Keynes should be set out with clarification of how much time she will get with neuro physio’s and how much with support workers.

I am concerned that any assessment of Anita’s needs by Rayners Hedge should not be influenced by resource issues in Milton Keynes. As far as I am aware Anita is still on a Rehab programme and will continue to be on a Rehab programme when she is discharged. Everyone has always agreed at the family meetings that Anita will continue her rehab progress in Milton Keynes. It has never been agreed that she should be changed to a maintenance programme when she comes home. Her current programme involves 5 days of 1 hour sessions with a neuro physiotherapist plus OT. Any significant reduction in this amount could prevent the continuation of the good progress she has made. I am not convinced with the argument that the social therapies carried out by what is called a ‘Rehab team’ should be a replacement for physical movement therapy!

I refer you to my letter dated on the 5th October 04 (copied to ——-) which stated the following:-
If we really are getting to the stage of discussing when Anita is going home we would both feel less anxious if you could reassure us that she would genuinely make better progress at home through the physiotherapy, occupational therapy and care you have identified.

This letter and my strong views at every family meeting has clearly indicated my specific concern over the amount of specialist neuro physiotherapy Anita will receive from Milton Keynes. We are now approaching the discharge date and you have still yet to identify any. There are still many tasks to be completed before discharge yet you have raised expectations that could lead to more disappointment for Anita or the process to be rushed.

I am not sure you understand how strong I feel about these issues. We are all agreed that psychologically Anita desperately needs to move on but her progress towards independent living should be made paramount. I will not let Anita’s future physical health be jeopardized by letting her come home unless the proper structure is in place for her continued improvement.

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.

SALT: Anita is carrying on with her facial and breathing exercises showing more control, better pacing of speech and better swallowing. Her mouth control has improved but she has some clicking in her jaw. I wanted Anita to visit Diana Farragher for facial phsyio because she has had some successful results. The staff will look into the validity of this.

Physiotherapy: Anita is getting more awareness when standing or transferring and is taking more time. She is able to stand for longer with less use of the back slab support and is tolerating more gait work. She is still struggling to plan and set up her movements. There appears to be some subtle changes in sensations in her upper body. She can pull herself up well but needs to work on pushing herself up to standing taking her weight on and straightening the left leg. Anita is now able to walk from the gym to her room without needing to stop and sit. She does this with the assistance of the back slab, quadrapod, a bandage and one assistant. She is better transferring her weight from left to right and has more activity on her left when taking weight. The use of back slab will be phased out to improve muscle activity in the left knee.

It was decided there would be more discussion to clarify with us the short, medium and long term goals. It was explained to me that a provisional discharge date was usually set first then once that was done the community rehabilitation input and care plans could be done. I expressed concerns that the staff were prepared to discharge Anita without knowing what continuing physiotherapy she would be able to receive. It seemed that the process was wrong to me!