Care And Respite Centres

Hopes are high for the imminent reopening of Horley's acclaimed Brambles Respite Care Centre for people with Multiple Sclerosis (MS).

Staff are said to be “on standby” for the reopening of the centre in Suffolk Close, which is being transferred from the management of the MS Society to MS Respite and Care Services Limited.

It had been hoped The Brambles would re-open to MS sufferers and their carers and families at the beginning of the year.

But though the centre, widely regarded as one of the best of its kind in the country, is still shut, the MS Society has said the transfer, saving The Brambles from closure, is still going ahead and expected to be completed soon.

Once contracts have been exchanged, the building could re-open in a matter of days.

A spokesman for the MS Society said: "Although we are yet to exchange contracts with MS Respite and Care Services Limited to transfer Brambles into their ownership, we are very close to doing so, and are optimistic that we will have positive news soon.”

The spokesman said: “Our staff are on standby so that within five working days of exchange, Brambles can reopen to guests.

“In the meantime, we are taking the details of anyone expressing an interest in staying at the centre and will contact them directly once we have any news."

The Brambles announced its temporary closure last November, having struck an 11th hour deal with MS Respite and Care Services Limited, an associated company of St Cloud Care plc.

The centre was due to shut its doors permanently at the end of last November after more than 20 years helping thousands of people with MS and their carers and families.

The state-of-the-art complex, which offers 24-hour care for people with MS and a much-needed break for their carers, had been under threat of closure since the MS Society withdrew its funding in June 2010.

The society made efforts to find an alternative care provider to take over the running of The Brambles, but announced last autumn that its talks with MS Respite and Care Services Limited had fallen through.

Arrangements were being made to close the centre, with redundancy talks taking place and letters being sent out to the people who used it, when the MS Society announced that it had reached a last-minute agreement with MS Respite and Care Services Limited.

A spokeswoman for the MS Society said under the agreement, The Brambles would close temporarily while the two parties worked together to agree precise terms and discuss detailed transfer arrangements, but it was hoped contracts could be exchanged in mid-December, allowing the centre to re-open to guests in the first few days of January.

That transfer has taken longer than expected.

A statement on The Brambles website this week said Heads of Terms had been signed at the end of November, and extensive work undertaken to prepare for the transfer, with the centre's staff transferring to the employment of the new owners under the arrangements.

Philip Connell, director of MS Respite and Care Services Limited, said: "We are pleased with the progress being made towards completion of the transfer of Brambles.”

Mr Connell said: “All necessary funding is now in place with the MS Society’s solicitors, and work on agreeing contracts is progressing well.

“We are excited to be working with the MS Society towards successfully concluding the transfer."

The transfer is part of an over-all programme of work which has already seen Leuchie House in Scotland and Woodlands respite care centre in York transfer to new providers.

Work is ongoing to also transfer the Helen Ley centre in Warwickshire.

The MS Society took the decision in 2010 to move away from directly providing respite care services at its four centres, to allow it to focus on enabling people across the UK to access respite and short breaks that are right for them, wherever they live.

MS is the most common disabling neurological condition affecting young adults and an estimated 100,000 people in the UK have the condition.

Source: Redhill & Reigate Life © Copyright Newsquest Media Group 2001-2012 (01/02/12)

There is new hope for Horley's acclaimed Brambles Respite Care Centre for people with Multiple Sclerosis (MS) this week.

The MS Society, which runs the centre in Suffolk Close, widely regarded as one of the best centres of its kind in the country, has announced its temporary closure.

But the society also said it has struck an 11th hour deal which could save it from permanent closure.

Instead, it said, if all goes well with a transfer agreement it is working on, the centre will re-open in the first few days of January.

The Brambles was due to shut its doors for the last time today (Wednesday, November 30), after more than 20 years helping thousands of people with MS and their carers and families.

The state-of-the-art complex, which offers 24-hour care for people with MS and a much-needed break for their carers, had been under threat of closure since the MS Society withdrew its funding in June last year.

Since then, the society had been seeking an alternative care provider to take over the running of The Brambles, but announced earlier this month that its latest talks with MS Respite and Care Services Limited had fallen through.

The society said arrangements were being made to close The Brambles, with redundancy talks taking place, and letters being sent out to the people who use the centre telling them of the closure. But the MS Society has now announced that it has reached a last-minute agreement with MS Respite and Care Services Limited - an associated company of St Cloud Care plc.

A new ‘Heads of Terms’ agreement has been signed to transfer the centre into the ownership of MS Respite and Care Services Limited by the end of January.

A spokeswoman for the MS Society said under the agreement, The Brambles was due to close temporarily from last Saturday (November 26), while the two parties work together to agree precise terms and discuss detailed transfer arrangements.

She said: “It is hoped contracts can be exchanged in mid-December, allowing the centre to re-open to guests in the first few days of January.

“The centre will start to take bookings again once contracts are exchanged.”

She added: “MS Respite and Care Services Limited has committed to continue providing a respite service for people with MS, and staff jobs would be secured, under the Transfer of Undertakings (Protection of Employment) Regulations (TUPE).”

Stuart Nixon, acting chairman of the MS Society, said: “It’s never been our wish to close Brambles and since last summer we have been working hard to find suitable alternative arrangements for guests and staff.”

Mr Nixon said: “We’re delighted that we have been able to re-establish common ground with MS Respite and Care Services Limited, and now have a new opportunity to keep the centre open.”

He continued: “We have a lot to do over the next few weeks before contracts can be signed, but we believe there is real cause for optimism.

“We recognise that this has been a very difficult time for all affected, and we would like to thank our staff for continuing to provide excellent care and support for guests, their families and carers during this time.”

Linton Connell, director at MS Respite and Care Services, said: “We are also very pleased that there now seems to be a clear path to saving Brambles and preserving this near-unique service for the South-east.

“It is a centre of excellence and we are excited to be working with the society towards successfully concluding the purchase.”

The Brambles, which celebrated its 21st anniversary in 2009, is a registered charity which provides high-quality care for people affected by MS in an environment in which support, motivation and dignity are among the values stressed as of paramount importance.

With a team of nurses and carers providing 24-hour care, the purpose-built centre offers short-term respite care for up to 28 guests at a time, and a much-needed break for the guests' carers.

Earlier this year the MS Society transferred Leuchie House, its respite care service in Scotland, to new ownership, and work is ongoing to transfer the York-based care centre, Woodlands, to a new provider.

Last week the MS Society also announced a new provider had been found for Helen Ley, the respite care centre in Warwickshire.

Last year, the MS Society stated that it had withdrawn funding from The Brambles and three other sites because it believed the money spent on them each year could be better used elsewhere on care provision.

It stated: “The society spent £2.7 million a year running four respite care centres, which helped around 1,400 people.

“We needed a better way of using the society’s limited resources to allow more people with MS to access the respite that is right for them.

“That’s why members voted in favour of the Board of Trustees’ decision last year for the society to stop directly providing respite care, and to use our resources differently to support many thousands more people living with MS to get respite and short breaks, wherever they live and whatever their needs.”

It continued: “While we’re making arrangements to close the centres, we remain open to considering any viable offers from potential providers that may come forward in the meantime.”

MS is the most common disabling neurological condition affecting young adults and an estimated 100,000 people in the UK have the condition.

Source: Redhill Reigate Horley Life © Copyright Newsquest Media Group 2001-2011 (30/11/11)

Supporters of the Helen Ley care centre near Leamington have cautiously welcomed the news that it is to be saved by a neighbouring care specialist.

Current owner the MS Society, which is to end its residential respite services at the centre for people with multiple sclerosis, has announced that Leamington-based Castel Froma has signed an initial agreement to take over the running of Helen Ley in January.

The move comes just weeks after a deal with MS Respite and Care Services Ltd to buy both Helen Ley and Brambles, another MS care home in Surrey, fell through, leaving patients, their families and carers in devastation and fear that the centre would close by the end of the year.

Reacting to this week’s announcement Angela Twomey, whose daughter Maureen lives as a permanent resident at Helen Ley, said: “I am hoping it is good news. We have been slapped in the face so many times. Until it’s written and signed, I don’t know what to think.”

Martyn Tilson, chairman of the Helen Ley Action Group, said: “I am obviously distraught for Brambles, because this means that it will definitely close, but for Helen Ley, I am delighted.

“But the devil will be in the detail. We don’t want to celebrate too early.”

Castel Froma’s Lillington Road site provides specialist care for people with brain injuries, multiple sclerosis and other neurological conditions.

A spokeswoman for the MS society said Castel Froma’s chief executive, Robert Pearce, intends for Helen Ley to continue providing both long-term and residential respite care, as it currently does.

Stuart Nixon, acting chaiman of the society, said: “It’s never been our wish to close Helen Ley and since last summer we have been working hard to find suitable alternative arrangements.

“We recognise that this has been a very difficult time for all affected and we would like to thank our staff for continuing to provide excellent care and support for guests, their families and carers during this time.

“We hope to move as smoothly and as swiftly as possible.”

Mr Pearce, who runs Castel Froma, said: “We are ideally placed to take over Helen Ley in a seamless fashion as we have cared for MS patients for many years.

“We couldn’t contemplate seeing Helen Ley close, so we had to put an offer to the MS Society.”

Jeremy Wright MP, in whose Kenilworth and Southam constituency Helen Ley is situated, has been in talks with the MS Society during the past month in efforts to keep the centre open.

He said: “This is excellent news. It was a team effort - there were lots of us working to achieve this outcome.

“My clear understanding is that Castel Froma will continue to provide the service that Helen Ley provides for people with MS, but it will also use what is a first-class facility to care for people with other conditions as well.”

According to the terms of the proposed transfer, all staff at Helen Ley, who were told about the plans this week, will keep their jobs.

Over the next few months, the charity will be working with Castel Froma to agree precise terms and conditions and discuss transfer arrangements, but the aim is to complete the take-over by the end of January.

Brambles care home is still due to close next week.

Source: The Courier © 2011 Johnston Publishing Ltd. (25/11/11)

Two charities are working together to provide subsidised respite breaks for people with multiple sclerosis in Chigwell, Southampton, and Southport.

Disability charity Vitalise and the MS Society have joined forces to provide the breaks at Vitalise's three accessible holiday centres, Jubilee Lodge in Chigwell, Netley Waterside House, in Southampton, and Sandpipers, in Southport.

The partnership will unite the two charities' discretionary funds in order to make stays at the holiday centres more affordable for people with MS, and their families and carers, who are in need of financial support.

The MS Society is now inviting applications from people with MS and their carers who are in need of a short break or respite. Vitalise will match the MS Society's funding for every applicant wishing to use the MS Society's Short Breaks and Activities Fund for a stay at Sandpipers.

The offer is initially available until February.

Jubilee Lodge manager Steve Trump said: "We're very pleased to be able to make this offer to people with MS and those who care for them.

"We understand that many people are struggling with limited budgets and we're determined that nobody should miss out on the opportunity of a respite break for financial reasons. That's why this partnership is such a good idea."

MS Society chief executive Simon Gillespie said: "This new funding arrangement will enable the MS Society and Vitalise to better support people with MS who are in need of a short break. We're delighted to be working together."

Source: The Press Association Copyright © 2011 The Press Association. (18/11/11)

Furious campaigners for the Helen Ley centre near Leamington are applying for a legal injunction to prevent owner the MS Society from closing it down after hearing a second take-over offer was declined.

The charity plans to stop running the home, which is England’s only dedicated respite care centre for people with multiple sclerosis, and it will close in January unless an alternative buyer emerges.

This week Martyn Tilson, chairman of the Helen Ley Action Group, told the Courier that MS Respite and Care Services Ltd (MSRCS), with whom a deal recently collapsed, approached the society to say the offer to take over both Helen Ley and another home was still open but the offer been declined.

Mr Tilson said: “Despite all we have already experienced, even we are shocked that the society seems determined to go against its stated aims and shut down this vital resource. Action to reverse this must be taken.”

Phillip Connell, director of St Cloud Care, the company that oversees MSRCS, said: “This is absolutely needless. We are prepared to take over both homes and we don’t understand how the society can justify this change of position.”

Sue Farrington, the MS Society’s director of communication, information and education, said: “Since we announced that we would be closing Helen Ley and Brambles, we have received a number of expressions of interest in taking over one or both of the centres. We are assessing these proposals as a matter of urgency, but no final decision has been made.

“Until we have more definitive news, it would not be helpful to give details of these discussions.”

Helen Ley Action Group

Source: The Courier © 2011 Johnston Publishing Ltd. (15/11/11)

A respite care centre for people with multiple sclerosis in Warwickshire is facing an uncertain future after a potential sale fell through.

In July 2010 the MS Society announced its decision to move out of directly providing respite care.

It has since been in talks to sell the Helen Ley Centre in Leamington Spa, along with centres in York, Surrey and East Lothian.

The centres offer day-care and holidays for MS patients.

In June the MS Society said the Helen Ley centre was being sold to MS Respite and Care Services and current staff would be transferred as part of the deal to "save" services.

But that deal has fallen through and a new buyer is now being sought.

Tony Payne, from Coventry, whose son Mark uses the centre, said: "It is terribly disappointing to hear it could still be closed.

"My son gets six weeks respite a year. As his main carer it's invaluable. When you're caring 24-7 you need time apart to re-assess and relax.

"The news that the sale has fallen through doesn't make you feel secure."

Barbara Williams, from the MS Society, defended the decision to find another provider.

She said: "The board of trustees took a very difficult decision and to change the way that we used our money to transfer the centres to alternative providers but for us to then be able to support many more people to have a break."

Source: BBC News © British Broadcasting Corporation 2011 (03/10/11)

Scotland's only respite centre for Multiple Sclerosis sufferers may have secured its future by becoming an independent charity.

A high profile campaign to save Leuchie House in North Berwick was launched after the MS Society withdrew its funding in December.

The management team put in a bid to operate the centre themselves after securing independent funding.

They were granted a six month reprieve to allow for a smooth transition.

Four centres across the UK were at risk of closure after the MS Society decided to move out of providing respite care.

Centres in York, Surrey and Warwickshire are to be sold to other companies.

Leuchie House offers more than 7,000 respite care days to MS sufferers from across the UK.

Its independent status will allow sufferers of other conditions, like Huntingtons and Parkinsons, to access its facilities.

The MS Society had used Leuchie House as a respite centre since 1998.

It was originally run by the Servite Sisters, under the name the Richard Cave Holiday Home, before it was handed over to the MS Society.

Source: BBC News Scotland © British Broadcasting Corporation 2011 (04/07/11)

The future of a respite home for people with multiple sclerosis threatend with closure has been secured after two massive private donations.

Leuchie House in North Berwick looked set for the axe last summer - alongside three similar facilities across the UK - following an MS Society (MSS) announcement that it was withdrawing from direct provision of respite care.

The home was granted a six-month stay of execution following a well-publicised campaign backed by politicians, service- users and a 30,000-strong petition to save it.

Manager Mairi O'Keefe used this time to establish a new independent charity to take over the running of the facility and source new funding to secure its survival. It is understood at least two supporters each gifted around £50,000 to the Leuchie House fund.

Under the plans, the centre will offer more beds and open its doors to people with other long-term conditions, including Parkinson's and Motor Neurone Disease - something the MSS was unable to do under its own charitable aims.

Mrs O'Keefe has set a funding target of £250,000 to be realised before the centre is relaunched in July, increasing to £700,000 by December.

On Tuesday, East Lothian Council is set to offer Leuchie House's management a £500,000 loan to dip into, if necessary, to ensure its long-term future. Mrs O'Keefe, expressed her "delight" that, after such an "emotional and difficult year", the service could now look to the future.

"Staff, carers and guests can now, with a degree of confidence, look forward to the continuation and development of a much-loved service," she said.

"The support we have received from major donors, East Lothian Council, politicians, MSS, and the local community has enabled this to happen.

"Please continue to support Leuchie House to ensure we achieve our goal of providing a quality respite short break for those with any long-term physical condition."

Sir David Tweedie, chairman of the International Accounting Standards Board, has been appointed chair of the new Leuchie House board of trustees.

Paul McLennan, leader of East Lothian Council, praised the campaign which has kept the facility open and said the strong board and management team would generate confidence in supporters.

"It's fantastic news and I think everyone values Leuchie House and the service it provides," he said.

"We at the council helped them to put together their business case and will offer them a £500,000 loan to draw on should they need it. This should offer stability and encourage more investment in the service. Another key thing is that 50 jobs have been saved at this very difficult economic time."

Source: Edinburgh Evening News ©2011 Johnston Press Digital Publishing (25/05/11)

Following the threat of closure for three MS society MS respite centres and subsequent vociferous protests by campaigners it has been announced by the MS Society that new service providers have possibly been found for Woodlands, Helen Ley and Brambles respite care centres.

It is hoped that Woodlands will be transferred to Christchurch Court, a company which specialises in residential and supported living for people with neurological conditions, and Helen Ley and Brambles respite care centres will be transferred to MS Respite & Care Services Limited, an associated company to St Cloud Care plc, which has 18 years experience in providing nursing care.

A legal process called ‘due diligence’ will now begin, with the aim of exchanging contracts in the near future.

Staff at all three centres will be transferred into the employment of the new providers under ‘Transfer of Undertakings (Protection of Employment) Regulations’ (TUPE). (19/05/11)

A Respite care base for multiple sclerosis sufferers in York under threat of closure could be saved after its owners revealed they were staging talks over switching its services to a new operator.

Residents at Woodlands Respite Care Centre are anxiously waiting to discover what will happen to the care they receive after the MS Society announced its plans for the Hull Road facility.

The organisation is looking at transferring the services provided at Woodlands and its two sister centres in England to other operators and has signed an “initial agreement with a prospective new provider”.

It is now in talks over how the move would work.

But the MS Society said the discussions will include the possibility of the 100-plus staff at the York centre being taken on by a new provider, but has not confirmed whether multiple sclerosis care would remain free under any new arrangements.

The society said it would now carry out “detailed negotiations” before a contract can be signed.

Chief executive Simon Gillespie said: “We appreciate this has been a difficult time for those affected and we are working as swiftly as we can to advance negotiations.

“We would like to thank our staff for continuing to provide excellent care and support for guests, their families and carers during this time.”

A spokeswoman for the society said details of the potential transfer, as well as whether services would be free, were still being discussed but said the new development was “a step in a positive direction”.

Rachel Higginbotham, of Strensall, whose MS began after her daughter, Becky, was born nine years ago and who visits Woodlands regularly, said: “It would have a dramatic effect on me.

“If it changes hands and I have to pay more, I would need to receive more money from the council because I can’t afford it myself.”

Andrew Keyworth, whose father is an MS sufferer and who has campaigned against the closure said: “This is something very close to my heart, because these centres offer a unique and much-needed respite service which cannot be matched in any other UK establishment.”

Source: The Press (c) Copyright 2001-2011 Newsquest Media Group (14/04/11)

Scotland's only respite centre for those affected by multiple sclerosis has been given a reprieve at the 11th hour.

The centre in East Lothian, due to close next week after a high-profile campaign to keep it open, is to be funded for at least another six months.

The Multiple Sclerosis Society in London has pledged the funding.

Efforts over the last few months to secure independent funding have come together in the last few days.

The centre's manager has received an offer of backing from several organisations.

It is proposed to offer more beds at the centre and open it up to people with other long-term conditions.

News of the development has been broken to staff and guests who were due to leave on Friday following the decision earlier this year by the MS Society's London headquarters to withdraw funding.

Campaign victory
 
Simon Gillespie, chief executive of the MS Society, said: "This is a really encouraging and welcome development.

"Leuchie House is much loved by the people who visit it and we have always been committed to finding an alternative provider to help keep it open.

"It is still early days, but we have had a positive response from the property's owners to this new bid and look forward to working with all concerned to help secure the future of Leuchie House for people with MS."

Scottish Labour leader Iain Gray has welcomed the last minute reprieve.

He said: "Although this is a temporary reprieve, it does at least give Leuchie House a chance, and at the very least another six months when people can benefit from the care Leuchie provides.

"Above all, this is a victory for those who have campaigned tirelessly for Leuchie since the day its closure was announced, and for the staff whose loyalty and service is the greatest strength of Leuchie House."

Source: BBC News © British Broadcasting Corporation 2010 (29/11/10)

Scottish Labour leader Iain Gray has called on the Charity Commission to intervene in the threatened closure of Leuchie House, the respite home for multiple sclerosis sufferers in North Berwick.

The Multiple Sclerosis Society plans to shut the home on December 3 despite a massive campaign to keep it open, which has included a 30,000-signature petition presented to Mr Gray outside the Scottish Parliament.

The East Lothian MSP has written to the Charity Commission - which is already investigating a wider complaint against the MS Society - claiming the process leading to the closure decision had been flawed.

He has asked Charity Commission chief executive Sam Younger to include the MS Society's decision to close Leuchie House and its three other respite care centres across the UK in the ongoing investigation.

Mr Gray said: "Clearly I have grave concerns about the decision itself but also about the consultation process which I consider to be wholly flawed.

"I have asked the Charity Commission to confirm if the investigation is looking at that process as part of the overall consideration of the MS Society's governance."

The charity plans to close its respite homes so it can fund more people taking short breaks elsewhere, but campaigners say the people who use the homes desperately need the care on offer.

Moni Robson, a physiotherapist who worked at Leuchie House, welcomed Mr Gray's move and said the consultation had not been satisfactory.

"It was a very small number of people being asked and those who filled in the questionnaire were not aware of the consequences. They were misleading questions," she said.

Campaigners failed to get a motion of no confidence in the MS Society trustees passed at the charity's AGM last month.

The original complaint was sparked by the decision of the MS Society to suspend the charity's Scottish council. Author JK Rowling, who had been a keen supporter, announced she would no longer carry out high-profile fundraising.

Denise Fagg, the former chairwoman of the Scottish council who lodged the complaint, said: "I have challenged the legality of suspending the council without taking it to a general meeting."

Source: Edinburgh Evening News ©2010 Johnston Press Digital Publishing (07/10/10)

Later this year, the only respite care home for people with Multiple Sclerosis in Scotland and the north of England will close.

The MS society, which runs Leuchie House, say not enough people with the condition are getting to use it, but visitors to the centre, in East Lothian, say they cannot live without it.

Jim Butterfield is one of the 10,000 Scots suffering from the neurological condition Multiple Sclerosis.

The debilitating nature of the illness means he needs round the clock support, and, for wife Ann, caring for her husband is more than a full-time job.

She said: "Jim's had MS for almost 20 years and needs an awful lot of care.

"For the last 15 years he's needed everything done for him. His voice has gone, he can't move about at all, he can't move his arms, he can't eat properly, so he needs help with everything."

The Butterfields have been coming to Leuchie House, near North Berwick, for many years. With conventional holidays no longer possible, they've come to rely on its services to get a proper break.

But the MS Society, which runs Leuchie House and several other centres like it around the UK, has decided to pull the plug on residential respite care.

They say most people with MS are not able to to make use of these services, and argue there is now a preference for more individualised care and holiday-style breaks.

But that argument has angered Leuchie House owner, Sir Hew Hamilton-Dalrymple.

The home has been in his family for generations and he leases it to the MS Society for a peppercorn rent.

Sir Hew has been left stunned by the organisation's decision.

He said: "It seems to be the plan to have individual packaged holidays, but the people who come here, the most severely handicapped 25%, have nowhere else to go and therefore are - I hate to say it - being cast aside for the benefit of the other 75% of MS members."

The MS Society did not want us to film inside Leuchie House or interview staff, but, as we arrived at the home, we were approached by a number of guests keen to have their say.

One, said: "It's just pathetic, the decision that's been made. It's a totally unique place and we all just love it."

Another guest added: "There is nowhere else, except maybe old peoples' homes, where we would be sitting with other people with dementia.

"Here, at least, we get good conversation."

But not everyone is against the decision to close Leuchie House.

Alex Stewart, from Aberdeen, has had MS for 13 years and said it was not practical for him to use the service.

"It's just that bit far away for a day visit and, for any length of time, quite expensive," he said.

"I wouldn't, as I understand it, get my wife in the same room as me, and we don't go on holidays apart, so it's not, personally, of any use to me."

The campaign to save Leuchie House has won cross party backing at Holyrood, but ministers say they cannot intervene directly.

The MS Society will wind up its service at the end of November, and said it would continue to seek alternative providers, while working with current users.

But that's offering little comfort to the guests and the 85 members of staff at Leuchie House.

Simon Gillespie, chief executive of the MS Society, told BBC Scotland's Politics Show that Leuchie House had done a great job, but argued that "times have changed".

"We have a moral duty of care and we're exercising that right now," he said.

"All the evidence shows the way that the MS Society sees the future is delivering for people with MS and their carers much more about what they want.

"All the evidence from a very extensive review shows that people want to move away from a style of residential respite care that may have been appropriate 40, 30 or 20 years ago, but people want different things."

Source: BBC News © British Broadcasting Corporation 2010 (04/10/10)

Members of the Multiple Sclerosis Society have endorsed plans for a shake-up of its respite care which may include closing its four residential centres.

Demonstrators assembled outside the AGM of the MS Society to protest against the possible closures.

It plans to close them by the end of next year, aiming instead to offer more personalised forms of treatment and help members have holidays.

The centres in York, Surrey, Warwickshire and East Lothian face closure if they are not taken over by other organisations.

Members voted by 2:1 (60%) at the AGM at a hotel in Wembley, north west London, in favour of its Board of Trustees' decision for the future of the Society's respite care, a spokeswoman for the charity said.

She added: "We are pleased that members have voted in favour of the Society's decision to update the way in which we provide respite care.

"This will ensure that more people affected by MS will be able to access short breaks that are right for them, wherever they live and whatever their needs.

"The current four centres are excellent but are not used by the overwhelming majority of people with MS who need respite care (95%).

"Most people's preferred setting for a short break is a holiday venue of their choice rather than a residential care home.

"The votes today mirror those of the consultation that led to this decision and as such confirm that the Society is heading in the right direction for people living with MS."

Source: The Press Association Copyright © 2010 The Press Association.(26/09/10)

A bitter row has engulfed a leading charity over plans to close its respite centres for people with multiple sclerosis.

The dispute will culminate tomorrow in a vote of no confidence in the trustees of the MS Society after campaigners collected more than 30,000 signatures opposing the closure of the four centres which currently provide respite for nearly 1,400 people a year.

It comes just a year after the author JK Rowling stood down as the society's Scottish patron, saying she could no longer be associated with a charity that had "changed beyond recognition".

The Harry Potter author, a high-profile supporter of the society for almost a decade, blamed a "longstanding and escalating" conflict between the Scottish arm of the charity and management in London for damaging morale and forcing staff to quit.

The latest dispute centres on plans by the charity's London management to close all four of its respite homes arguing that people with MS would prefer "holiday-style breaks".

The charity currently runs Leuchie House in East Lothian, Scotland, Helen Ley Centre in Leamington Spa, Woodlands in York and Brambles in Surrey at a cost of £2.7m a year. It argues that withdrawing from directly running respite care will enable them to fund up to 30,000 breaks elsewhere.

It claims the decision is based on a consultation, which found that people with MS would prefer "holiday-style breaks". The charity hopes to establish a directory of suitable accommodation and a fund which would help pay for carers to support people with MS on holiday. It argues that this would enable people to take holiday breaks with their families and give them more choice over where to stay.

But a petition against the closures has collected more than 30,000 signatures. Campaigners argue that while many people would welcome more hotels with specialist facilities, there is nothing available to rival the specialist care and facilities of the centres. They argue that holiday breaks with family members will not give carers time off, one of the key purposes of respite care.

Janice Cook, a former vice chairman of the Society and Susan Tilley, a former assistant National Treasurer, tabled the no-confidence motion to be debated at the charity's AGM in London tomorrow. Martyn Tilson, who runs the Action Group against the closure of the Helen Ley centre, said: "It will be a tragedy if these closures go ahead. These centres are like really good hotels for people with advanced MS, with all the care they need. People with advanced MS frequently have no movement in their limbs and only move their head or their eyes. They need total care and it is unrealistic to expect that they are going to be going off on a variety of holidays with their family."

The charity argues that the current provision is unfair because the respite centres are mainly used by people who live relatively nearby.

A spokeswoman said: "Geographically, our centres are inequitable and we believe the Society has a much wider role in supporting people with MS to get the care they want – residential or otherwise."

Should the centres be shut?

Yes, says Dr Christine Barton MBE, 64, a former teacher and lecturer from Sheffield

I was diagnosed with MS in 1985 and am now quadriplegic. I cannot move any part of my body apart from my head. But I am still very active and don't let MS stop me doing what I want to do.

I do not like the term respite care because it suggests that people get respite from me and that makes me feel very uncomfortable.

I used the MS respite centres once 15 years ago and it wasn't very pleasant. I found they took away my independence. Now I organise care in my own home when my partner is away and we try to get a break together twice a year.

No, says Anne Félix, 58, from Coventry

I was diagnosed with MS when I was 36, and for the past few years I've been in a wheelchair. I have been going to the Helen Ley centre in Leamington Spa since 2002 and it is fantastic. At first, I was nervous it would mean sitting staring out the window, but it was not like that. It is like a health spa. After my first time, my family said I looked 10 years younger. I have built longterm friendships and when you are in a wheelchair it's good to have these friends. A stay at the centre is like a holiday for me. It's not just to give my carer a break, it gives me a break.

Source: The Independent © independent.co.uk (24/09/10)

Campaigners have collected more than 30,000 signatures on a petition to save Leuchie House, the respite home near North Berwick which the Multiple Sclerosis Society wants to close.
 
MSPs will discuss the future of the home in a special debate, today, in the Scottish Parliament.

One of the campaign organisers, Moni Robson, a physiotherapist who worked at Leuchie House, said the response to the petition had been "amazing".
 
She said: "It just shows the strength of people's feelings."

Around 1400 people a year use the MS Society's four respite homes in the UK. The charity says withdrawing from direct provision of respite care will allow it to help fund more people taking short breaks elsewhere.

But Ms Robson said: "The people who use the respite centres desperately need them. They cannot get the same provision. People with severe MS have greater needs and you would think the MS Society would see the need to look after people with severe MS."

Scottish Labour leader and East Lothian MSP Iain Gray and his Westminster colleague Fiona O'Donnell were on hand to receive the petition from about 50 campaigners who marched to the Scottish Parliament, accompanied by a piper.

Mr Gray said the MS Society had made "the wrong decision" about Leuchie House and called on it to rethink.

He said: "I've visited Leuchie House on several occasions and I'm in no doubt the service is invaluable.

"It is probably the only facility that allows even sufferers with high dependency to have a break with their family and carers. Everyone who has been believes it is absolutely crucial to their quality of life."

One campaigner walked 260 miles in 11 days from York to Edinburgh to publicise the case for keeping Leuchie House open. Andrew Keyworth's father suffers from MS and for the past three years he has taken a break at Leuchie House with his wife, who is his full-time carer.

Mr Keyworth, 33, from Hull, said: "It's the only holiday they can really have together. I've tried to book them surprise weekends away at so-called disabled hotels, but when you ask about specialist care and equipment they don't have it."

Two critical motions have been tabled for the Multiple Sclerosis Society's annual general meeting in London on Saturday - one to suspend the respite care review which proposed the Leuchie House closure and the other a motion of no confidence in the trustees who made the decision.

The society said it looked forward to the debate as "an opportunity to explore the ways in which respite services can be developed in the future".

A spokesman said: "The society recognises the passion and commitment of campaigners.

The decision faced by the Board of Trustees was far from easy but was taken to ensure that as many people as possible affected by MS can be supported through the society to access respite care and short breaks."

Source: news.scotsman.com ©2010 Johnston Press Digital Publishing (23/09/10)

Volunteers are calling on a multiple sclerosis (MS) charity not to abandon four residential respite care centres.

The centres in York, Surrey, Warwickshire and East Lothian face closure if they are not taken over by other organisations.

A vote of no confidence in the MS Society's board has been tabled for its annual general meeting.

The charity says its review aims to give patients and carers "more choice and control".

The centres offer day care and holidays for MS sufferers.

Guests can take part in group activities and outings, while carers are reassured by the presence of round-the-clock nursing.

The MS Society says 1,385 people stayed at the centres in 2008/9 - but it estimates around 30,000 people need respite care.

It says more than 20 organisations have expressed an interest in taking over the centres.

But campaigners fear closure is more likely, because the centres have equipment - such as ceiling-mounted hoists - which is highly specialised for MS patients.

Protests will be staged at the charity's annual general meeting on 25 September.

"Scandalous waste"
 
Martin Rantzen, a retired farmer from Warwick, was a volunteer driver at the centre near him for seven years.

He said: "It's a specialist nursing home with incredibly talented staff. If it were taken away, there wouldn't be anything else to replace it - and I'm sure that goes for the other centres too.

"Most of the guests I fetched in for the first time used to be very nervous and apprehensive - as were the carers, who were left at home.

"That was on the way in. After they'd had a week or two of a wonderful holiday, the conversation on the return journey was invariably about how soon they'd be able to come again.

"The Helen Ley care centre in Warwick was built from charitable donations. To abandon this huge investment of voluntary funds would be nothing short of a scandalous waste."

The MS Society has praised the "professionalism and dedication" of staff and volunteers at the centres.

But it says a more flexible approach is needed - because the locations of the centres mean they're hardly ever accessed by patients from Wales and Northern Ireland.

Anger and anxiety
 
The charity's chief executive, Simon Gillespie, said: "We really hope these facilities won't be lost, and we're working hard to make that happen.

"We understand the anger and anxiety this change has caused. Respite is very important to people.

"But we think there needs to be a much wider spectrum of activities than residential care.

"We want to make sure people have an appropriate range of choices. In some cases, it might be helpful for them to have cash so they can access quality services.

"This isn't about saving money. We want to spend a similar amount of money supporting people across the UK in the future."

Source: BBC News © British Broadcasting Corporation 2010 (13/09/10)

MS Society’s use of evidence more than a little careless by Benedict Rickey

The MS Society has hit the headlines of the sector press over the last couple of weeks over its decision to close the four respite centres it runs across the UK. MS Society members have tabled a motion calling for a suspension of this decision and are also putting forward a vote of no confidence in the Board (see Third Sector).

As an employee of a third sector think tank, I usually like to stay neutral in these sorts of debates. In this case it has been a bit difficult. Personally, I have an attachment to these centres. My uncle suffers from MS and requires 24 hour care. Each summer for the last couple of years he has gone to the Helen Ley Care Centre in Leamington Spa to give his carer, his wife and daughters a break from caring for him. He raves about the quality of care he gets there and he – and his family – are gutted that it may not be there next year.

As I began to look into the decision, the more I realised that my opposition to it wasn’t all emotional, it was also rational. Working at NPC I have learned the value of good evidence in decision-making, but also that using this evidence requires careful analysis, discussion and reflection. The MS Society was worryingly selective about which evidence from its respite care review it used. The review included focus groups and a large survey with MS sufferers and their carers. However, the findings that made it into the MS Society Board papers narrowed all this evidence down. The only figure quoted from the survey was that 65% of respondents said their preferred setting for respite was for a holiday venue. The papers then state that there is inequity in access to short breaks, including the MS Society care centres, and that the centres don’t provide good value for money. It is this analysis of the evidence that led the Society to do a u-turn in its approach to respite care.

The MS Society’s analysis paints a simple picture of expensive care centres, inequity in access and modern citizens wanting flexible care. When you look at the full breadth of evidence, the picture for each of these issues is much more complex............

Full article - Benedict Rickey's Blog

I strongly disagree with the decision by the Multiple Sclerosis (MS) Society to withdraw funding from the UK's four dedicated MS Respite Centres.

Because of these threatened closures I will be walking 260 miles from the Woodlands Respite Centre in York from Friday 10th September 2010 to Leuchie House in East Lothian, arriving there on Sunday 19th September 2010 at around mid-day. I am inviting you to join me!

'Save MS Respite’ Petitions (available from www.savemsrespite.com) will be collected from the numerous pre-designated points along the journey. On the 20th September, the walk will continue to the Scottish Parliament in Edinburgh to personally hand over the petition sheets to an allied MSP member.

I hope to get some media coverage both along the trip and at the start/final destinations. I will also utilise my group on facebook ‘Walk to Save MS Respite 10/09/2010' and a blog on www.savemsrespite.com to keep people up-to-date with the progress of the walk, along as posting the location and date of each section of it, allowing people to join me at any time and bring along any petitions they have collected themselves.

My father, who has MS, has visited Woodlands many times over the years. He has made good friends with both staff and other guests and times his visits now to meet up again. A couple of years ago my parents where lucky to find out about Leuchie House in Scotland which is the only MS respite centre offering holidays for both the MS sufferer and their carers/family. They have had a couple of wonderful holidays together and met some fantastic people.

I believe that these centres offer a unique and much needed respite service and memorable holidays to those with high dependency MS, something that cannot be matched in any other UK establishment. The MS Society has announced that they will try and transfer care to another provider, though this will not be MS specific. Failing this these centres will CLOSE, with Leuchie House in East Lothian going first at the end of this year, and the other three Centres (Brambles in Surrey, Helen Ley in Warwickshire and Woodlands in York) set to close sometime next year

See also www.saveleuchie.com and the individual Facebook pages created for the respite centres ‘save leuchie’ ‘save woodlands respite centre’ ‘save brambles respite centre’ and ‘save helen ley respite centre’ for more information

Regards

Andrew Keyworth

This view expressed in this letter is that of the author and not MSRC.

At one fell swoop, the Multiple Sclerosis (MS) Society is set to close four superb centres that give more than 1,300 people a year an enjoyable break and their carers a little time off.

The society says a consultation revealed that people with MS wanted more "holiday-style" breaks.

In order to achieve this it plans to, er, get rid of some of the country’s best holiday facilities specialising in supporting the disabilities related to MS.

The popular respite centres – Helen Ley Centre in Leamington Spa, Woodlands in York, Brambles in Surrey and Leuchie in East Lothian – offer facilities developed over many years of meeting the needs of people with MS, such as wheelchair-accessible gardens, physiotherapy suites with hydrotherapy pools, bars and evening entertainments, as well as organising supported days out for guests.

Leuchie even has six accessible log cabins at a nearby resort, for those who want a bit more independence.

The decision to sell the four centres, or to close them down if no buyer is found by next year, is due to be ratified at the society’s AGM in September.

The society says that a survey it carried out last year found people with MS “overwhelmingly want more individualised services, more choice and holiday-style breaks”.

That’s a bizarre interpretation of a survey that found that more than four-fifths of people who had stayed in the respite centres found the break “very beneficial” and another 16 percent found it “quite beneficial”. Almost all said the breaks were good or very good. Incomplete survey?
Although the option of “holiday breaks” attracted narrowly more votes as a first choice for people with MS (30 percent, compared to 26 percent for respite centres), those most disabled, and therefore more likely to need special facilities, were the least likely to manage to fill in and send back the survey.

Among carers who filled in the survey, the four respite centres were by far the first choice.

Campaigners against the closure of Leuchie alone have already collected more than twice as many signatures on a petition against the closure than completed the MS Society’s survey.

A spokeswoman for the MS Society told the Eye that by “concentrating our efforts on accrediting holiday and care organisations, campaigning for better care and services and offering cash grants, we will be able to extend people’s options so that a hotel break is feasible, if that’s their preference, and to ensure more hotels and holiday companies are conforming to disability requirements and offering the necessary adaptations.”

The society isn’t the first charity to want to move away from providing practical services into trendier campaigning. Scope’s shift towards lobbying for disability rights in 2005 saw schools and supported living flats close ( Eyes passim).

In Leamington, those who have raised funds for the centre for decades are furious. Until 2005 it was an independent charity, the Helen Ley Charitable Trust. Martin Rantzen, a volunteer driver for the centre, has written to the MS Society trustees, saying: “To abandon the huge investment of voluntary aid, bequests, donations and covenants spent on the building and recent multi-million-pound upgrading of the centre would be nothing short of scandalous waste.”
 
Source: Private Eye © Private Eye 2010 (20/08/10)

Owned by the Multiple Sclerosis Society, Woodlands exists to provide high quality respite care for people affected by Multiple Sclerosis in a warm, friendly and caring environment, offering support and motivation, and promoting each person's individuality, privacy, dignity, choice and rights.

The Resource Centre was added in 2003 to enable Woodlands to more widely share the specialist MS knowledge gained through the Respite Care Centre.

The Woodlands MS Resources & Respite Care Centre, which provides short-term respite care to sufferers of the debilitating condition, passed an unannounced inspection by the Commission For Social Care with flying colours.

All standards examined by inspectors were met by Woodlands. Excellent quality outcomes were experienced by Woodland's guests in all areas inspected on April 17, according to the lead inspector.

Paula Rawding, the manager of Woodlands, said: "We know from our guests that Woodlands provides an excellent respite service to those affected by multiple sclerosis, but to have this proved and written in black and white by our inspectorate is fantastic.

"We have worked tirelessly over the last few years to ensure that our high standards are maintained in all areas of Woodlands at all times, and to further improve and develop wherever possible and within available resources."

Woodlands is one of only three centres of its kind in the UK.

Generous staffing levels, 24-hour-a-day qualified nursing care and specialist equipment ensures that Woodlands can cater for highly-dependent people. Woodlands has recently undergone an expansion programme. An addition four bedrooms have been added to the centre.

To find out more about accessing respite care at Woodlands, phone 01904 430600 or visit the website www.woodlands.org.uk

Source: The Press Privacy Policy © Copyright 2001-2007 Newsquest Media Group (29/05/07)

Sue Ryder Care provides specialist care for people living with MS, and other neurological conditions.

They have 8 neurological care centres around the country, offering both long term and respite care, and also provide homecare. Their centre in Aberdeen is their first purpose built care centre, and the first of its kind in Europe.

© Multiple Sclerosis Resource Centre (MSRC)