To me it has long been common sense, even though I have no medical training, that if you can’t exercise then you will get obese and your limbs will start to seize up. OK, as I have said, I am not a doctor, just the carer of one of those long term disabled people, who I have had to watch fighting weight gain and increasing seizing of the upper body joints with increasing age. She was born with doubly displaced hips. In Belfast one of these was permanently stiffened. Later after two hip replacements the other was removed altogether. For the last twenty years she has been a wheelchair user, slowly becoming more and more dependent. About two years ago, while researching an article on Whickham Villas Health Spa, a private venture to give specialist one to one gymnasium and hydrotherapy treatment to severely disabled people, I was impressed and, having spoken with them felt that they could help my wife.

We approached Social Services thinking that this was something that Direct Payments was designed for. They said it was medical and sent us to the doctor. She sent us to an ordinary gym! They couldn’t help, and quite honestly had little idea of what was wanted. Sent to a specialist on skeletal problems, he agreed with us and sent us back to our doctor with a letter saying so. Doctor has now appealed to Tyne and Wear  PCT three times without success and two years has passed by with my wife getting slowly worse. Sunderland Carers now got involved and made the money available for my wife to get nine months treatment at Whickham Villas.

In the meantime we had spoken to a friend, also a double CDH with the same problems. About a month ago they both started the treatment. In that time my wife has been able to give up pain killers, is now able to turn her neck to at least some extent for the first time in three years, and has lost some weight. The other lady has reported similar improvements.

Now, as a layman I would say “Case proven!”. So why can we still not get direct payments, and why will the PCT still not look at this? You might say, “Because of the cost!”. This treatment is only costing £55 a month. Without it in the not too distant future, when I could no longer cope, she would have either ended up in a nursing home or with a team of workers in her own home, unable to travel or live other than an existence at a cost to the NHS of at least £500 a week! Now, if this treatment only keeps her active for a few extra years it still has to be well and truly cost effective I would think. 

My reason for bringing this to your attention. I realise that this is unlikely to help all long term disabled people, but believe that it could help many, if they could be persuaded to go down this route. Our little, and very amateurish experiments need to be looked into and investigated further by those qualified to do so. If it is proved that our theories are correct, then more facilities like the Whickam Villas establishment may well need to be supplied around the country (I believe that this place is quite unique),  but, if it keeps people active for a few more years then it has to be very cost affective and beneficial to those undertaking the treatment.

John Killick
Hon. Sec. DMFed