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History of the Spinal Unit Action Group

historyThe Charity was formed in 1973 by therapy staff and their friends with the aim of raising funds to make life a bit more pleasant for the patients at the North West Regional Spinal Injuries Centre based in Southport.  Because the Spinal Unit covers a large geographical area  patients’ families did not always find it easy to visit on a frequent basis and, at the time, the road and public transport links were not as good as they are today.  Members of the Group befriended the patients and organised trips out to the local pub, cinema, theatre etc and for the occasional meal.  After a while it was realised that it was generally only those patients who were up and about who were benefiting.  The Group changed their activities and introduced a “Night-In” whereby once a month a home cooked meal was brought in together with a few drinks for everyone to enjoy and this continues today.

After a few months the Group realised that although the majority of patients were being discharged home there was a nucleus of patients who did not appear to be going anywhere because there were no suitable places for them to be discharged to.  In those days independent living with care packages was relatively unheard of and if you couldn’t go home for whatever reason the only alternative was long stay elderly care hospitals or , if you were lucky, a place at a Leonard Cheshire home.

Appalled by the plight of these patients the Group resolved to try and do something about it.  One particular patient, Tony Dubarry had been “ living” on the ward for over 20 years simply because he had nowhere else to go and no relatives to care for him. In 1957 at a time when people with neck injuries rarely survived. Tony broke his neck falling from a roof.  He was just twenty-one years old at the time and survived his injuries. As he was one of the first tetraplegics (paralysed from the shoulders down) to survive, his case study was published around the world. At the end of his rehabilitation Tony was ready to be discharged but was not able to go home as he had no relatives who were able to care for him. His only option would be a transfer to an long stay elderly care facility and at such a young age this was unthinkable. Instead he “lived” on the ward in a small four bedded bay with just a bed and locker to his name. At the time Weld Road opened he had been in the hospital 27 years !

He was very much the inspiration behind the Group’s decision to provide a home for him and for others like him where he could live an independent life with the care and support needed.

The debate began about which would be better, a purpose built facility or a conversion of an existing property.  A purpose built facilty might be cheaper but land
would have to be found to build it on.  A large house might be more expensive to convert but might be more easily obtained – Southport being a Victorian town with a wealth of large Victorian houses.

The decision was resolved when a large property became available and in 1979 the Charity purchased No 6 Weld Road .  Because it was in a state of poor repair the purchase price of £40.000 was relatively cheap .

Fundraising began in earnest to raise the money to convert the property and the Charity received tremendous support from the local people and businesses. 
However, it soon became apparent that such a small group of people (a membership of about 20 people) couldn’t possibly go it alone and the chances of raising the amounts of money needed to complete the project were very slim indeed.

The Group decided to approach local housing associations for assistance but soon became despondent when one after the other were unable to help.
Despondent but undeterred they approached Grosvenor Housing Association now known as Arena Housing who recognised that the project was viable and were brave enough to take us on board.

After further fundraising and six years after purchasing the property the conversion was finally completed and ready for occupancy.  The total bill came to more than £600.000 of which £125.000 had been contributed by the Charity - a mammoth amount of money for the time.

The journey was not an easy one and there were many obstacles that had to be overcome.  During the conversion period (nearly two years) the Group encountered five different Fire Officers who all wanted something different to their predecessors !
Building Inspectors and changes in legislation were a constant headache. What might have been acceptable yesterday isn’t acceptable today ! It’ll have to be changed.

Eventually the work was completed and after six years of waiting Tony moved into his own home at 6 Weld Road in 1985 along with three other residents and the home with a small ‘h’ has been running successfully since the day it opened. Sadly, Tony died in April 2002 after 17 very happy years living his life the way he wanted to,  enjoying all the choices and freedom that everyone has.

So then, how does it work ?

The property was transferred to the housing association who lease it back to the charity who collect the rent from the residents on behalf of the association.
The cost of the care for each resident is funded by Social Services and heavily supplemented by S.U.A.G. 
The care staff are employed by S.U.A.G and registered with the Registration authority.

Staff have been trained in all aspects of care by the Spinal Injuries Centre staff who have been a source of great support in assisting the Charity. The care provided is of high quality and costs rather more than the amounts received in fees from Social Services.  Because of this it is not only non profit making but runs at a defecit, currently about £30.000 each year, which has to be funded by the Charity,

Weld Road is unique – it has never been done before or since and offers a home to ten permanent residents and a temporary home to two people needing a halfway house between hospital and home or for a short period of respite.  Residents all have their own rooms and are free to choose their own decor and furniture .  All rooms are well appointed with TV aerial sockets, vanitry units and wheelchair friendly wardrobes.
It is fair to say that all our permanent residents have definitely stamped their personalities on their rooms !!! There are no set rules and regulations and residents can enjoy all the freedoms that you and I enjoy – getting up and going to bed when they choose, come and go when they please, have visitors when they choose, eat what they choose and when they choose.  All that is asked is that they observe the usual considerations for others that might be expected in any family home.

The home is managed by a committee of eight people, all members of the Charity who, for our sins, have been doing the job since the home first opened on a purely voluntary basis.  The committee meets with the manager of the home on a regular basis to ensure that the home is running smoothly, to discuss applications for permanent or temporary residency and to sort out any other issues.

The home’s manager, Margaret has been with us from the beginning, together with some of the care staff .  The staff and residents have become part of each others extended family, often going on holiday together.

Some of the original residents that moved in at the same time as Tony remain with us and are assured of their home for life.  Interestingly, one resident who came for a short period of respite applied for permanent residency.  Despite having his home adapted he felt that the level of care received via his care package was neither reliable enough or sufficient to meet his needs and he found it preferable to live at Weld Road, not with his family but near enough to his family to sustain his family relationship and in the knowledge he was going to be looked after in the manner he wished.

Weld Road is only one facet of the Charity’s work and the Group continues to be actively involved in supporting current in-patients together with out-patients of the Centre including providing accommodation and travel costs for relatives, funding specialist equipment and research and providing regular social activities on the ward to name but a few. New members are always welcome and we meet in the Salus Centre at Southport District General Hospital on the last Wednesday of every month at 8.00 p.m. Why not come along and find out more and be involved as much or as little as you like.

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©2010 Spinal Unit Action Group. All rights Reserved. Charity Registration No: 1101507

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