New Petitions

In that case, the petition is perhaps appropriate.We thank the committee for considering our petition, although its subject might sound mundane after what I have heard this morning. I have had multiple sclerosis for 35 years, and for the past five or six years I have required constant assistance. My wife is my only carer and she finds that, to avoid undue stress, she needs a regular break. In fact, I think that she will need one after this meeting.Our case is not unique and similar situations arise in relation to problems other than MS. At first, I was able to receive respite care at the Lanfine young disabled persons' unit at Liberton hospital in Edinburgh—the definition of "young" at the unit was anyone between 16 and 65. Because that unit is essentially a rehabilitation unit, I benefited from occupational therapy and physiotherapy that is provided by excellent staff. However, when I reached 65, I had to look elsewhere for respite care. My care requirements were for 18 months met in an Edinburgh nursing home; however, the respite facility was withdrawn.I became aware of the MS Society's respite homes at Leuchie House, near North Berwick, and at Holmhill in Grantown-on-Spey and have used both facilities. However, I have used Holmhill more than I have used Leuchie, which offers only 11 nights' stay at one time. When I stayed at Holmhill, my wife Jennifer had plenty of time to deliver me, have her two weeks' break and then collect me.However, despite users' pleas and a petition that contained more than 1,400 signatures, the centre closed on 30 November. Two English homes that were run by the MS Society also closed. Those closures follow a similar pattern to events that prompted petition PE428, which was presented by Mr Egan about a year ago and to which we refer in our petition. We are concerned that the MS Society can suddenly propose to close a tried and tested home without prior warning to staff and users and that it can then, within only six weeks of discussions with staff—but with no formal opportunity to involve users and carers—finalise the decision to close without offering comparable alternatives.I wrote in summer 2001 to the leaders of the parties in the Scottish Parliament to express my concern at the lack of respite centres. The general response from the Minister for Health and Community Care was that the carers' strategy would improve matters in respite care and that £10 million would be made available to local authorities to support carers, including provision of short-break services. We refer to that in the supporting information that we submitted with the petition. Despite all the assurances, the letters to MSPs, MPs, Highland Council, the MS Society and the MS Society Scotland, and despite September's new legislation for carers, a superb respite resource has been lost and there are no comparable alternatives.

The MS Society eventually gave a list of places in the same area. However, it seems that most alternatives have an age limit of 65—despite what the minister said—and there might be only one or two beds for respite in a nursing or geriatric home. The list was supposed to be available in June, but we received it only after we submitted the petition and, in our opinion, it is not adequate.

By "comparable alternative", I mean a place where I am happy to leave my husband, knowing that he will have a happy holiday and be reasonably independent. In Holmhill, he was able to take part in the community of Grantown-on-Spey because he has a power wheelchair and there were plenty of carers to take people into the village. The house had a lift, which he could use to access his room. The MS Society holiday home that remains open in Scotland is Leuchie House. It is good, but it is three miles out of North Berwick on a narrow road without a pavement. The lift is an old metal one that people with the use of only one hand find impossible to use, which means that such people do not have access to the whole house.None of the alternatives offers anything comparable to Holmhill. As my husband said, many of the available places are single beds in geriatric wards. If the bed is free and one is lucky and wants it tomorrow, that is okay, but there is no question of booking it for a fortnight three months in advance. Some of the alternatives have age restrictions and two of them are irrelevant because they are travel companies that take people on holidays abroad, which we do on our own. There are many good self-catering places where we go together. Such breaks are lovely and we thoroughly enjoy them, but once a year, we like to have separate breaks.None of the alternatives that are offered by the MS Society can accommodate couples; although we like to have separate breaks for a fortnight, many people do not. Holmhill and Leuchie accommodate couples, but the alternatives do not.

People with other neurological problems will be accepted, as will people with arthritis or who have had a stroke. Sadly, from the MS Society's point of view, Holmhill has been underused during the winter months—between January and March—so I presume that the society was concerned about the cost. However, it is my view that the MS Society exists to look after the welfare of people with MS and their relations. In 2003, Holmhill will have been in operation for 21 years. One expects a charity such as the MS Society not to be thinking about how to make money, but about how to use money effectively.The MS Society could have advertised the facility better. It says that it did advertise, but we were not impressed by the campaign. One of its fund-raising staff visited Holmhill a couple of years ago and said that there would never be empty beds again. The MS Society in Edinburgh does not seem to have dealt with that issue effectively.Likewise, earlier this year, the matron of Holmhill invited representatives from all the councils of the MS Society—of which there are approximately 44—to come and see Holmhill. As far as I know, only two people visited in May 2002, and letters of apology were not received from those who did not take the opportunity to visit. That is a general opinion taken from chats that I have heard at Holmhill, but we are disappointed with the way that matters are handled.Jennifer has said how confident she is when I am in Holmhill. I enjoy being there; the care standards are extraordinarily high and the travel provisions are so good that I am confident and relaxed during my time there. I have enjoyed my stays in Leuchie House, but its main disadvantage, apart from those to which Jennifer referred, is that the longest possible stay there is only 11 nights, which does not cover the longer periods that are sometimes necessary.

Dr Ewing referred to the figure of 2 per cent that is mentioned in the MS Society's letter. It seems to be very low, but it actually reflects the fact that only a small percentage of people who have MS need respite care.

Those people are unhappy about the prospect of the journey to Leuchie House.

I am bad with figures. It is quite a high number, but I will not attempt to guess.

The MS Society gave the figure for last year as 136 people. I stayed in Holmhill three times last year, but repeat visits are not included in the society's figure. If that figure also included those who benefit from the centres, such as wives and families, it could be doubled. I agree that 136 does not seem like many people in a year. Numbers have dropped, and the tourist office in the Highland region gave me figures that show that tourist numbers have also dropped, as was reflected in the press this year.

The last time I was there was during the last two weeks in November—after which it closed—and four rooms were vacant.

The house could take 12 to 14 people at most.

It might have been less than that because some double rooms are used as singles.

The criteria for staying at Holmhill were changed, too. People who needed extra care were excluded during its final year, so of course the numbers dropped.

No, although alternative addresses have been suggested. One would have to go to separated nursing homes and other places like that, apart from Leuchie House. Leuchie House was recommended for those who would lose out when Holmhill was closed. However, there is now a lot of pressure on Leuchie House and it is quite a distance for anyone to travel from Orkney or further north.

Yesterday, we heard of someone who tried to get in to Leuchie House next September and was told that there are no vacancies until October.

I am fortunate because I can go to Leuchie House for short stays. However, by accident rather than design, at the beginning of the year I heard that there is a respite facility at Broughty Ferry in Dundee—the Mackinnon Centre. We have been to visit that centre and I know that I can apply to go there. I have not done anything about it and was not able to go for a short stay earlier this year. It is curious that that facility is not on any of the lists that are provided by the MS Society.

Again, the Mackinnon Centre would not accommodate couples. That does not affect us but we are talking about other people, not just us.

The centre uses a huge amount, but the centre sets out to help everyone with MS. I presume that the centre has taken a huge chunk of the MS Society's funds, but it was never cheap to run.

There is a very good publication by the Royal Association for Disability and Rehabilitation, or RADAR. It is a guide for the whole of Britain and Ireland, which covers hotels that are accessible and self-catering places. It also includes places such as Leuchie House and Holmhill. Very few places in Scotland are comparable to those, although there are several possibilities in England. The national MS Society has now produced a guide, but it is similar to that which the MS Society Scotland has produced—a lot of the places are irrelevant.

There is an organisation called VOCAL—the Voice of Carers Across Lothians—with which I am sure members are familiar. It is an organisation that cares about the carers. It is certainly working on things and has recently produced a document that I have not yet laid my hands on. RADAR is fine for holidays. As Jennifer said, we go on holidays and she helps me, but there needs to be this different set up in order for her to get a break.I do not think that the MS Society is short of a penny; it has a lot of money. Although it is expensive to run places like Holmhill, the society has lots of money to do that sort of thing. The society is putting money into, for example, employing MS specialist nurses—I am sure that members will have heard about those. The society is financing them for the first three years, after which the health service will take over. I do not suppose that I will ever see an MS specialist nurse, because I was diagnosed a long time ago and we have learned from experience how to deal with the problems. The nurses will deal with folk in the early stages of MS, but I do not think that I will benefit from some of the things that the MS Society is now thinking about putting money into.The Deputy Convener We have received a letter from Mark Hazelwood, the director of the MS Society Scotland, in which he discusses how the society uses its money; he says that it proposes to use the money a little differently. What is your reaction to his points? The letter states that the society would use the money in other ways:"For example:Increasing the number of MS nurse specialists and other specialist care professionals such as physiotherapists, each of which benefits many hundreds of people affected by multiple sclerosisMeeting financial needs through the expanding payment of Individual Support Grants (welfare grants)Developing a programme of Self-Management Training for people with MS".Those are fairly profound differences.

My view on that is that very few of those things would help me, given the state of my MS. I cannot get physiotherapy because I can no longer go to the Lanfine unit, but I could get physiotherapy every day when I was there for a week or a fortnight. I am not sure how the suggestions in the letter are meant to work, although it all sounds fine. There are physiotherapists available for people who need physiotherapy, but it is damned difficult to get it. Overall, I think that the MS Society Scotland is making a curious change in direction—I think that it is being led by the national organisation in London.

I would like to know how the society will do that. I do not know how it can do that more effectively than it currently does. I mentioned that physiotherapy was available in one respite facility, but—unfortunately—it seems that there are few respite units like the one in Liberton hospital, which provides respite and physiotherapy together. It has been said that the Liberton hospital is for rehabilitation, but why should rehabilitation stop at 65?

I feel that it should. The MS Society will fund the specialist nurses for three years, after which the nurses will be taken over by the health service. MS is a neurological problem, so when one is diagnosed with MS, one is initially referred to a neurology department. I feel that all the folk with neurological problems should be in a system in which they can be provided with the follow-up care, continuous regular physiotherapy and anything else that they need.

If I may make one more point, I want to return to the petition that Mr Egan submitted, which concerned the closure of a Sue Ryder home. That petition was quite helpful to us because when that petition was considered, it was strongly emphasised that it is unfair on the users when charities close such places at such short notice. One would like to think that both that petition and our petition make a point that should be addressed.

Is the publication an English one?

You have mentioned websites. We do not have access to the internet yet—a very small percentage of us in respite homes do. It sometimes sounds a bit overpowering, even if it is meant to be the easy way to get information. In fact, it is not so easy without the facility. Thank you anyway.