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THE OAKENFIELD REVOLUTION

A pioneering scheme to help disabled people become more independent became reality at Burgess Hill 25 years ago.

Businessman Norman Thody, whose own son Grahame lives independently with disability at his flat in Burgess Hill, fought for years against planning obstacles and old-fashioned ideas about the way disabled people should be cared for.

His ideas revolutionised the way the public viewed disabled people, changing them from objects of patronising sympathy to people who, although physically handicapped, were making the best use of their abilities.

Mr Thody and his original team never received or sought public recognition in the way of honours like the OBE or MBE for their outstanding work.

But their early campaigning against the odds saw The Disabled Housing Trust charity that Norman Thody founded grow into the modern Disabilities Trust with its headquarters in Burgess Hill and centres all over the UK.

As the Trust celebrates its milestone anniversary and meets modern challenges nationwide Mr Thody tells the Middy from his retirement home in Cyprus of his pride in what the staff and residents are achieving.

BURGESS HILL WAS BEST

I was always grateful for all the help we received from the Middy whenever we needed to highlight some important issues.

The Trust was such a vital and important part of my life. During the 20 years I served as its founder chief executive it became very much my baby.

Today, the Trust is a well established, financially secure, major charity. It has become during the last 25 years one of the largest UK charities.

Mid Sussex saw the birth of the Trust and, it was in Burgess Hill where it established its first major project and its headquarters. It was a difficult birth since in, 1979 the attitudes, then, towards people with disabilities were altogether different and far less enlightened than they are today.

Few people realise that today some 25 years later that Trust could well have died in its infancy. The fact that it survived the initial trauma was due, in so small measure, to the help and support it received from several well known local personalities.

I am not quite sure how we came to settle in Burgess Hill, but I seem to remember that one of our early Trustees was utterly convinced that Burgess Hill was one of the best places to try and establish our new charity.

When we started we had no money, no staff, only boundless enthusiasm and a grim determination to succeed. We were so impoverished that our trustees meetings in those early days, were held in Stephen Love's study at Boundstone School, Lancing, which had the merit of not costing us anything! We even had to have a whip round to pay for the coffee!

The first tentative contact we established in Mid Sussex was to approach Doug Smith, who was, at the time, the housing manager for the local authority. His initial response was a very disappointing one since he expressed the view that there was little local need for the facilities which we were planning.

He didn't entirely slam the door in our faces since, he went on to say, that if we could actually prove a need he would then do his very best to help us. Following this meeting I wrote to every local newspaper in East and West Sussex and asked them to publish a personal letter from me requesting disabled people or their relatives to get in touch with me, should they feel, as I did, that a new exciting project offering independence to people with disabilities was badly needed.

Dozens upon dozens of letters flowed in and to be fair to Doug Smith he became convinced and then totally committed. The council eventually offered us a green field site just off Maple Drive, with a large oak tree in the middle, hence the name Oakenfield. This was the first project of many, started by the Trust.

Doug and Mid Sussex District Council went one better and made available to us part of their Housing Investment Programme allocation so that sufficient funds became available which enabled us to start to build the first six bungalows! We had by this time raised sufficient charitable funds to acquire the site from the council.

THE KLEINWORT CONNECTION

The second major contributor, who I shall always regard with fond affection, was the late Mrs Ernest Kleinwort, who was a tremendous help to the Trust and served for many years as its President. Shortly after the Charity was formed, I wrote to Mrs Kleinwort and her charitable trust asking if she would be willing to assist us financially with this new and exciting Sussex project.

She replied in a handwritten note enclosing a cheque for 5,000 and commenting that whilst she couldn't be sure we would succeed with our plans she liked them and considered that we were worth taking a chance on. She went on to say, that we would need some money to ascertain whether the project would be viable or not.

This, was, the first of many donations. For many years afterwards Mrs Kleinwort played a very significant part in the affairs of the Trust and her support and active encouragement were a major factor in our establishing our presence in Burgess Hill and elsewhere.

Another local personality who eventually, became a good friend to the organisation was Cllr Martin Long, (from Wivelsfield) who was at different times the chairman of the then Mid Downs Health Authority and West Sussex County Council Social Services Committee. When, at his invitation, I first met him, he told me very candidly, that he needed to establish whether or not I was a crank or whether I was somebody he should take seriously.

I think he was already convinced that I was a fully paid up member of the awkward squad and whilst we did not always see eye to eye, he always did take us seriously! I found him both objective and sympathetic to our aims. He gave me much good advice and helped me to understand better the workings of local government, I was grateful for his wise counsel.

WINNING EARLY BATTLES

In the early days we had to overcome a great deal of prejudice. Before we became respectable, and eventually accepted by the establishment, we had to endure our fair share of fights with 'City Hall,' the Government, and other statutory bodies. We always had to contend with inadequate funding from both local and central government. During those early years it was a constant and persistent battle for survival.

I remember, in particular, one local example of this which was a salutary lesson for us all. Although Mid-Sussex had been extremely helpful and co-operative in securing for us our Oakenfield site, and assisting us with some very welcome financial support, we did run up against one major planning problem which could have destroyed our basic concept.

When, granting formal planning consent for Oakenfield, the council had reserved to themselves the decision on how the site boundaries should be fenced.

Our hearts sank, when they came up with a requirement that all the boundaries should have a six foot high brick wall around the entire perimeter. Their view was that this was vitally necessary in order to protect the residents! It was never made clear who they should be protected from.

We took the view that people with disabilities were an integral part of the wider community and should be considered part of it, not, apart from it! It was our firm conviction that Oakenfield should appear to be a normal part of the local community, not perceived as a ghetto for people with disabilities.

Despite all our entreaties we could not move the planners. We then decided to ask the Middy to highlight our problem and a highly pertinent news article quickly appeared.

I well remember that, in response to this article, the Middy received dozens of letters from concerned readers, many of which they published, What was particularly gratifying for us was that so many of these letters came from people who would shortly become our neighbours.

I was told at the time, that not one single letter had been received in support of the Council's position. Less than a week after the Middy article appeared, the decision was reversed!

THE FUTURE

Having got over this particular hurdle the Trust went from strength to strength and was subsequently able to build further similar projects in different parts of the country.

Along the way, it has established itself as a major force in the treatment, care and rehabilitation, of those suffering from traumatic brain injuries. It has since become the largest single provider of services to this client group, certainly in Europe, if not in the entire world.

The Trust has also become one of the major providers of services for those with Autism.

I shall always take pleasure from the fact that the trust has always sought to provide help to those with the most extreme and disabling conditions. We always went out of our way to assist those, where services, either didn't exist, or, if they did, were woefully inadequate. One colleague summed it up by describing such people as being 'those who were difficult to serve'.

For us, these were the people most in need and most deserving of our help.

It is worth remembering, that at the time, this was all regarded as pioneering stuff.

The need was there, it was very apparent, and could easily be demonstrated. However actual facilities needed to address these complex needs were, for the most part, either non-existent or very thin on the ground.

Something I am particularly proud of, which was a Trust first, was our decision to appoint as Trustees some of our residents and service users. It was our view that they had a particularly important role to play, because at the end of the day, they are really what the charity is all about! They will tell us if we are doing a good job!

We were the first charity to do this, but we had to fight the Charity Commission over a two year period to secure permission to do so. At the time a Victorian concept of charity was still very much the vogue and it was not considered proper that beneficiaries should take part in the management of a charity from which they benefited.

I am glad that this was a battle we won. Today quite a number of charities now have Trustee service users who are involved in the management of their lives and the future of the charities with whom they are involved.

PUBLICITY SAVES THE DAY AGAIN

Before we built our residential home, known as Ernest Kleinwort Court, which formed part of the Oakenfield development, we had managed to finish all 17 bungalows that today are part of the Oakenfield community.

In addition, we had managed to establish the first community care scheme serving the needs of our residents with the aid of a grant from central government. This was a special scheme intended to provide work for the long-term unemployed.

Unfortunately, although this scheme proved a great success we could not get the funding renewed for the following year. Consequently we had little alternative but to ask the county council to provide us with some financial help to enable this unique pioneering scheme to continue.

At the time, this was the only sheltered housing scheme for people with disabilities in the entire county so we were somewhat surprised to receive a very firm refusal from the county council. It looked, once more as if we were facing yet another potential disaster.

With the help of the Middy, we organised a leaflet drop, as an inset in the local paper highlighting our dilemma and appealing to the people of Mid-Sussex to help save our care scheme. Within two weeks we had raised sufficient funds to pay our care staff wages for a further year. The rest, as they say, is history.

PRINCESS DIANA put the Royal seal on a pioneering scheme to help disabled people become more independent when she visited the Disabled Housing Trust at Oakenfield and Kleinwort Court at Burgess Hill in 1985.

Businessman Norman Thody, who founded the Trust and is now retired in Cyprus, recalls the great day in the last of his three interviews in the Middy on the past 25 years of the Trust.

IN THE KITCHEN WITH PRINCESS DIANA

I cannot look back over some 25 years without recalling the visit of Diana, Princess of Wales to Oakenfield in 1985.

It was a very exciting event for residents and staff and one that everybody looked forward to in much anticipation.

One thing I remember very well, which at the time really surprised me, was that following the announcement in the Middy and other local papers, of the visit I was absolutely inundated with requests from local dignitaries to attend the opening of Ernest Kleinwort Court and to be presented to Her Royal Highness.

Such was the interest that everybody expected invitations to be forthcoming not only for themselves, but to their extended families as well. All of this was somewhat embarrassing since we simply did not have the space to accommodate all the people who wished to come.

We had an advance meeting with Patrick Jephson the Secretary to Princess Diana, and others on Her Royal Highness's staff who were involved in the preparations. I explained to them our problem and asked them to suggest a solution.

The reply was interesting. Patrick Jephson explained that it was Her Royal Highness's view that the day should be primarily for the residents, their families and our staff. It was agreed that all the surplus dignitaries should only meet the Princess when she arrived by helicopter at Burgess Hill Football Club. Honour was satisfied.

The visit itself was a great success and although much has been written about the troubled life of the Princess all I can say was that she was absolutely wonderful to our residents and staff. She was able to relate to them in a quite unique way. She made people feel they were important and valued.

It had been emphasised to me that the visit must run to a very strict timetable since the Princess had other engagements she had to go onto elsewhere, Consequently I was very conscious when I was conducting the Princess around the building that I must ensure that everything ran smoothly and to the agreed timetable.

Although everything was strictly timed it didn't quite work out that way.

I was conducting Her Royal Highness around the building and, as we were passing the kitchen door when she asked me what was in there, I said: 'The kitchen Ma'm. She gave a giggle and said 'I love kitchens' and promptly walked in on the staff who, at the time, were preparing lunch.

This was entirely unscheduled and you can imagine the astonishment of the kitchen staff to be faced with the Princess who wanted to know what was on the menu. However she put them at ease as she did everybody else. She also spent more time than was allocated to having intimate private chats with residents.

Her Royal Highness also opened Shinewater Court for us and we kept in touch with her right up until her unfortunate death.

I and others remember her with affection.BRAIN INJURY – THE TRUST'S BIGGEST DECISION

"Looking back, the major highlight for me was the decision the Trust made to enter the field of brain injury. In my judgement, this was the single most important decision The Trust has taken in 25 years.

It was and remains my view that if we go into any new fields of endeavours that we should aim to do it superbly well or not at all!

We received an approach from Col Tom Lacy, who was at the time the chairman of Headway, asking if we could provide residential accommodation for his son at our new development at Shinerwater Court in Eastbourne.

I agreed that we would carry out an assessment of his son, to ascertain whether his son would be a suitable placement, and would be able to fit in with our other residents. We were concerned whether we had sufficient expertise to provide the right level of care and help thus enabling us to give some meaning and purpose to his son's life.

After the assessment we had to conclude that this was well beyond our capabilities at the time. Such care as was necessary was totally outside of our own experiences and consequently we had to refuse to help.

Many of us were moved by the problems this case presented to us and I invited Tom Lacy to meet with me and others of my management team to discuss what we might be able to do to assist those people and their families who had to daily battle with this problem.

It became clear very early on that little existed in this country to provide any sort of meaningful services for those suffering from traumatic brain injuries.

It was our conclusion that what was required was an entirely different approach for such individuals, involving not only specialised care but also highly specialised rehabilitation. We had to face up to the fact that with few exceptions such knowledge and experience were outside our management experience.

Here we were being faced with an enormous unmet need that was crying out to be addressed. Brain injury is not only a tragedy for the individual but leaves the whole family damaged.

I managed to persuade our trustees to allow me to visit the USA with my colleague Mike O'Connor (now the Trust's director of quality assurance) and see how they did things there. At the time, the USA was regarded as being the most advanced country in providing services for this client group.

We came back enthused, and managed to convince our trustees to borrow 2,000,000 from our bankers and to start to build our first two Brain Injury Units in Milton Keynes, and Leeds. This also involved us in the recruitment of highly specialised staff, including our then clinical director Dr Rodger Llewellyn Wood. Rodger had an international reputation, and lots of sound ideas that resonated with us.

Rodger was very much one of the pioneers in social rehabilitation programmes for head-injured people and served the Trust well over several years.

I would be the first to acknowledge that this decision took a great deal of courage, faith and vision on the part of our Trustees. We were, after all asking them to borrow a great deal of money and to enter into a new field of endeavour and one where we had no previous management experience. No similar projects existed elsewhere in the UK, although our market research studies confirmed the existence of a very real need.

Although we received considerable encouragement from various statutory sources, and amongst fellow professionals, there was nevertheless no way we could guarantee success.

With hindsight, this was a calculated risk that paid off big time. The Trust is now, some 13 years later, the largest single provider of brain injury services in Europe, if not the world, headed by director of Brain Injury Services Barrie Oldham.

The Trust enjoys a tremendous reputation not only in this country but throughout the world, for the quality of this service This is probably the achievement of which I am most proud.

ANOTHER NEW CHALLENGE

AUTISM

Following on from this was our decision to try to help those with autism and their families. Autism is a very complex disability which affects the ability to communicate and relate to others.

Since no two people are affected in the same way it calls for an individual, expert approach.

Our entry into this new area of operations was fortuitous in the sense that we were approached by Martin Lyth the chairman of the Dysons Wood Autistic Trust who was looking for a sympathetic charity to take over the work of his Trust.

This was an organisation established by a group of parents who were concerned about the future of their children, but they were tired, and lacked sufficient financial resources. They were also having trouble meeting some of the new stringent legislative requirements being imposed by the regulatory agencies.

The Trust managed in record time to turn the operation around and today Dysons Wood and our other Autism Services are a great success. The Disabilities Trust is now one of the leading providers of services to children and adults with autism, offering education, housing and support to more than 120 people. From the local perspective there is of course the Trust's specialist service for adults with autistic spectrum disorders at Hollyrood, Lindfield, the only service of its kind in West Sussex. Hollyrood was opened in 1999 and currently caters for 24 adults under the general responsibility of Mike Pilbeam, the Trust's director of physical disability and austism services.HUNDREDS of people have had their lives transformed in the past 25 years by the pioneering Disabilities Trust, based at Burgess Hill.

To celebrate its special anniversary year the Middy has published in the past three weeks a series of interviews with its founder Norman Thody about his pride in the past and present work of the charity at Ernest Kleinwort Court at Burgess Hill and nationally.

GRITTY DETERMINATION IS A LESSON TO US ALL

It took determination and grit to turn the dream of the Disabilities Trust at Burgess Hill into reality.

And it takes the same attributes for people given a tough start in life for them to overcome their disabilities and lead as independent lives as possible.

Many residents are happy to live their days at Ernest Kleinwort Court and indeed many have little choice because of the nature of their disabilities.

For those who dream of more independence outside there is help on hand to build their confidence and personal skills.

Sue White, 42, is one of the many success stories.

Known as a born homemaker for the way she has cosily customised her bedsit, Sue has made such progress in her personal development that she is leaving to get married to Tim Smith on August 14.

To the casual visitor the sight of Sue banging out messages on her computer by hitting keys with her forehead typifies the sheer willpower of people like her to overcome the tough hand that life has dealt.

After much effort the words appear on the screen for me: "I have been here 13 years and it is very good, but I am leaving on August 14 to get married." I decide not to ask her any more questions to spare her more exertion and within a few seconds I am ashamed of being so patronising. It is an easy mistake to make.

Sue uses one of seven independence training flats which are designed to help residents acquire the skills needed to care for themselves in the outside world. The centre is registered to take up to 35 people, and also has two bungalows as well as flats with en-suite facilities.

Computers have opened up a new world of experiences and communication and many residents are proud of the systems in their room, but the outside world has its attractions too. Chris Grantham, 26, is a relative newcomer and says: "I feel it's friendly here, there's a good atmosphere. I have been here 14 months. It's only about 20 minutes from my home in Portslade so I can go home if I want to, but I can be independent here. There's plenty to do, I do some sport and go swimming with a group at the Dolphin Centre in Haywards Heath."

Katy Montgomery, 23, is another of the newest residents, having previously lived in Leatherhead.

She said: "It's good here in Burgess Hill. You can get around a lot more, you can go out in your wheelchair and get into the town. Up where I was it costs me 10 to get a taxi up the town. One of the things I really enjoy here is working on my computer."

The hard work of all the trustees and staff over nearly three decades has kept the trust's original vision alive and resident Dawn Dunkley, 41, appreciates it more than most. Dawn said: "I have been here almost from the time it opened. I have become much more independent. Before coming here I lived in Hampshire, but it is better here. I think Mr Thody's a brilliant bloke. I think he ought to get some recognition. He's done a lot of good for a lot of people."

The Trust now has office headquarters at the Market Place in Burgess Hill under chief executive Colin Hedley and 15 trustees providing central support services to nationwide services for physical disability, autism, and brain injury as far afield as Sunderland.

Mr Hedley summed up the progress of the Trust over the past 25 years in a report when he said: "Over that period we have provided vital care and support to many thousands of people with disabilities, and grown from one very important local service in Sussex to a national organisation that is progressive and highly respected."

NORMAN'S DREAM CAME TRUE 25 YEARS AGO

Champagne celebrations for Disabilities Trust

COMEDIAN Jimmy Tarbuck got serious to pay tribute to the people helped by the Burgess Hill-based Disabilities Trust.

The legendary comedian had also drawn laughter from an audience including actress Jane Asher with his quick-fire gags at the Dorchester Hotel in London as staff, residents, and supporters of the now-national trust celebrated their 25th anniversary with a glittering champagne luncheon.

Jimmy, one of the world's great stand-up comics, briefly put the quips to one side as he paid a touching tribute after seeing a video, with the guests, of disabled Graeme Thody, from Burgess Hill.

In the video Graeme explained why his father Norman, a businessman, campaigned for the first Trust buildings at Oakenfield in Burgess Hill a quarter of a century ago.

The late Diana, Princess of Wales thought so highly of the work that she visited Burgess Hill to officially open the Ernest Kleinwort centre.

Mr Thody flew in from his retirement home in Cyprus to hear Jimmy tell the audience that he admired the way disabled people adapted to make the best of their lives and also admired the time people gave to help them. He said: "They are heroes who get over their disabilities, and there are people who give their time. There are of course people who give money, but when you give time you give more."

Speaking of the support workers who helped disabled people Jimmy said: "I admire all of you. I know it is appreciated. You do it with a little bit of love and a cuddle, and you need a little bit of that in the world that we live in."

In his video tribute wheelchair user Graeme Thody said the only accommodation available for disabled people when he was small was an old army camp. He told the audience: "I said to my dad 'Don't put me in a place like this.' That's how it all started."

Graeme had a closing message for everyone, reminding them of the whole ethos of the way it began: "Carry on doing a good job. We are all individuals."

Norman Thody and his co-founders, Stephen Love, from Henfield, and Margaret Besant-Hutchins, from Lancing, who worked at Ernest Kleinwort Court until a few years ago, saw the Disabled Housing Trust grow into the national Disabilities Trust, and extend into autism and brain injury rehabilitation.

David Rundle, UK commercial director of sponsors Barclays, said the success of the Trust over 25 years would outrank most of the FTSE 100 business index.

All three founder trustees received special mementos of their achievement, and were congratulated by the Duchess of Northumberland, trust chairman Graham Anderson, and Julie Fernandez, star of the award-winning television series The Office along with winners of long-service awards.

Mr Thody told the Middy at the luncheon: "All the people that received long service awards were people who I appointed, which is very satisfying.

"I always had very great ambitions for the Trust. I always had a vision. I had one ambition when I retired and that was to make sure I left it financially secure and I don't think anyone can gainsay me in that. I was absolutely delighted to be here for the luncheon."

At the beginning of the celebration musician Rupert Johnson showed the sort of grit that Jimmy Tarbuck had been referring to.

Rupert was heading for a career in classical music with his talented horn playing when he received serious brain injuries in 1996 at the age of only 18, losing some of his faculties. He has taught himself to play again and rebuilt his life with the help of the Trust and his family and friends, and received prolonged applause for the pieces he played, including music from Forrest Gump.

His father David said: "His has a wonderful relationship with the Trust and has his own flat. The miracle is that he has not lost the ability to play the French horn."

The charity has its central support office and its Kleinwort Court centre at Burgess Hill.

Among the local staff to receive long service awards were Carol Pattenden, of central support services, for 15 years; Mike O'Connor, director of quality assurance, 15 years; Lyn Miles, of central support, 18 years; Marilyn Freeman, Ernest Kleinwort Court, 19 years; and the Trust's longest serving employee Kathy Maple, of central support services, at just over 19 years.

Mr Anderson paid tribute to the founders, and said: "Without them the Trust probably would not have survived."

He also said despite the success there was still "much to be done" to help disabled people.

Marina Kleinwort, a descendant of Trust benefactors the late Joan and Ernest Kleinwort, of Heaselands, near Haywards Heath, represented the Kleinwort family.

Among the messages of support were those from Jimmy Hill, Sally Gunnell and Tanni Grey-Thompson, who won gold medals in the Athens Paralympics.

 
 
 

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