[student nurse]

Hi I am a 3rd year student nurse working on a project on continuing care needs of people with spinal injuries I need to discover what services are available for health care needs, financial support, self help groups etc the whole holistic picture including physio and OT input plus anything else that goes on. If you are able to help please contact me my email address is debbie.mitchell@tesco.net I appreciate any help you are able to offer
thanks
Debbie

[Apparelyzed]

Although I am no expert in this area, I have found a little information which you may find of use.

If you are unable to work due to a disability, you may be able to claim such benefits from the government such as Invalidity Benefit, Disability Living Allowance, Cares Allowance or Industrial Injuries Disablement Benefit.

Further information on Disability and Carers benefits can be found at the Department for Work and Pensions website: http://www.dwp.gov.u...scare/index.asp

If you were injured in an accident, then the usual course of action is to sue for compensation, but this is only successfull if someone was liable for your injury. If the case is a clear case of liable, it may take at least 3-4 years before a settlement can be agreed, and in such cases, a payment from the liable party can be made in advance of the final settlement. This payment is called an interim payment, and is deducted from the final settlement. This money can then be used to purchase suitable accomodation, and pay for carers.

As far as long term care is concerned, the quality and cost will vary depending on the local authority, and the level of care required. If a person has been paralysed from an accident or disease, the local authority may insist the person needs to go into a care home, but if compensation is involved, the person may be able to set up a team of carers so they can live independently. The costs of supplying carers would be factored into the compensation.

For those who do not have compensation, there are grants available to modify homes with such facilities as shower rooms etc, but these are means tested, and the amount depends of the local authority.

The government also announced a scheme to help people buy their own private wheelchairs, and they will make a contribution to the cost of a lightweight chair following an assesment. They will also give a voucher for a cusion to sit on. These cusions can cost in excess of £350, so it's a scheme worth knowing about.

I am sure there is other information out there, and if someone can add to the above, please do so.

Regards

Simon.

[student nurse]

Thanks for you reply, what happens with things like physio input following discharge to the community does it happen? I assume gps and district nurses provide day to day health care and appointments at specialist units are made but what about the rest of the person. Does anybody supply any pyschosocial support, are you reliant on self help groups and websites like these. I have tried to find information from various places but nobody seems to take responsibility for it, is it all as hit and miss as it seems to be. What would you like to see the government make available. With certain conditions the government has made national service frameworks to ensure a complete service to all no matter where they live what would you want included in it. What is missing from the services you currently get and does what you get immediately following discharge vary from what is available a few years further down the line. Thanks for any help I really appreciate it.
Debbie

[Apparelyzed]

Debbie,

pyschosocial support ?, you must be kidding!

In the 12 years I have been paralysed, I have never heard of pyschosocial support since leaving hospital. I guess if you felt you needed it, you could get a referal from your G.P or District Nurse, but it is not supplied unless you ask/beg for it.

Physiotherapy is another area which is not automatically provided. Again, in the 12 years I have been paralysed, no one has offered me physio once I left hospital. It's more of a case that if you need it at home, you have to pay for it, or get contractures bad enough to be considered for it.

As far as care is concerned, the District Nurses will only provide your wound dressing, catheter change, bowel and bladder management. You then have to get carers in to handle your washing and dressing, and they also take care of the domestic duties as well.

The only problem with the carers, is anyone can be a carer, and the quality of care ranges from very good, to the bare minimum without being neglect. A alot of the carers come from an agency, there is a high turnover of staff, as usually they are paid the minimum wage, you also can go weeks without seeing the same person twice.

If I had my way, the carers would be properly trained, paid a wage to reflect responsibility, and assigned only two or three patients to look after. This way a patient / carer raport would be established and continuity of care would be much better.

Things may now of changed since I left hospital, although I still go back every three months to get my Baclofen Pump refilled. Having an NHS Framework is ok on paper, but it's how it is put into practice which matters.

An example of this is the wheelchair voucher scheme. I have been told that I will have to wait in excess of 40 weeks by Leicestershire Wheelchair Services for an appointment. That is not 40 weeks before I see them, thats 40 weeks for a date to see them!

Then I will be assesed to see how much money they will give me towards buying a relacement wheelchair and cusion. Bare in mind that if I was to get a pressure sore in the meantime, it would mean a 6 week stay in a spinal unit, costing at least £3000 a week to the NHS.

My new wheelchair will cost £2000.00, they will probably give me around £500.00 towards the costs. Go figure!

I know the NHS is trying it's best, but the polititians have no idea whats happening on the front line, I know as a friend of mine is an MP, and my wife is a nurse, and here I sit in the middle. If I couldn't see the funny side of all this, it would be enough to make you depressed!

Simon.

[student nurse]

I too worked for a care agency before starting my training and looked after a lady with a spinal injury, in fact I still visit her both socially and to help out from time to time, that is where my interest has come from I dont feel I can have been too bad at my job. In my little experience what you are telling me is true here too, I come under east devon health authority. My friend has not had any physio input etc and has to find funding from her own pocket for many things. I am a mature student and not totally naive in the fact that I think I can change the world and certainly dont feel a piece of paper is going to make any difference to anything but unfortunatly those that design nurse training still like to kid us student nurses that all is rosey in the nhs garden. I know exactly what carers can be like if your are lucky enough to be able to acces any, there is an acute shortage. Those that choose to do the job come from two categories, one they care and work hard and are paid peanuts til the system really grinds them down or they start training for something with a higher salary or those that fall into the category of dont care workers. I have just spent seven weeks working in the district with nurses and have seen much of this poor care first hand, sometimes even the training makes no difference, I know district/community nurses who refuse to carry out bowel care on people who are spinally injured. I dont have any answers I dont know what is the way forward. I need to make a comparison with what the government etc say should be happening and what actually is. Then there are the unofficial carers who get no wage at all, how much are they saving the nhs a year, my friend asked for a carer to sit with her one evening so that her partner could go out, the cost was astronomical, yet if she had no partner she would be either be in residential care or needing 24 7 care and how much would that cost. She is able to work from home but then they penalise her for her earnings this world is crazy but I dont know what the answer is. I hope I havent depressed you that was not my aim at all Im sorry if I have Hope youre still smiling
Debbie

[student nurse]

I'd like to thank everyone that contacted me and contributed to my continuing care essay via this web site. I scored a stonking 70% on an essay with a 40% pass level. Sadly my friend that i used (with permission) as a case study died before it was completed of a stroke. What was weird was that she had her injury 5 weeks apart from Christopher Reeve then died two days after him. I shall miss you Ronnie you were an incredible inspiration. RIP my friend.

[Joed]

I'm so terribly sorry to learn of your friend's passing. I'm glad to know she had a friend in you, someone who seems to truly care about people and their struggles. It's the spirit of advocacy like yours that will truly make a difference, although the progress is slow, change usually can only be realized in increments.

Again, my sincere sympathies, and best wishes to you in your career in caring.

~Joed