Plenary, 22 Jun 2000

Meeting date: Thursday, June 22, 2000

Official Report 747KB pdf

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Milestone House Hospice

We move now to members' business, which is a debate on motion S1M-913, in the name of David McLetchie, on Milestone House hospice. The debate will be concluded after 30 minutes without any question being put. Again, I thank Mr McLetchie for agreeing to defer this debate to allow for the emergency statement.

Motion debated,

That the Parliament notes with concern the proposal to close Milestone House in Edinburgh, Scotland's only hospice for AIDS sufferers, and urges the Scottish Executive to initiate discussions with Lothian Health Board, the City of Edinburgh Council and Waverley Care Trust with a view to devising a funding package which recognises that it is a national facility equipped to meet the needs of patients and their families.

I am delighted that my motion on Milestone House has been chosen for debate today. I am gratified by the level of support that it has attracted from members. In particular, I welcome the support of Margo MacDonald and acknowledge her motion on the wider issue of a management strategy for HIV and AIDS, which is complementary to my motion.

I am delighted to see in the chamber Michael McMahon, who chairs the cross-party group on palliative care, which has got off to an excellent start. I welcome the fact that Iain Gray will respond for the Executive, not only as the Deputy Minister for Community Care but as the constituency MP for Edinburgh Pentlands, in which Milestone House is located.

I visited the hospice in the Easter recess and can vouch for the fact that it is a unique national health care facility, with committed staff, who provide an exceptionally high standard of care to their clients.

Waverley Care Trust, which runs the hospice at Milestone House, was established in 1989 as a direct response to the HIV epidemic in Lothian, and currently manages three projects. Milestone House, which opened in 1991, operates as a 16-bed residential unit, taking patients from across Scotland, although predominantly from Lothian. It is run at a cost of just under £1 million per annum. The trust also runs Solas HIV and AIDS information and resource centre, in which several services operate, such as child care, an arts programme and counselling. The trust also runs a befriending buddy service. The trust works annually with more than 400 people who are infected with HIV, and with up to twice that number of people who are affected by the virus, such as partners, children and other family members.

The key statutory partners—Lothian Health, City of Edinburgh Council and the trust—have been carrying out a review of the future of Milestone House since late 1997. The review highlights the welcome fact that the death rate for AIDS and HIV sufferers has reduced significantly, thanks to the introduction of combination drug therapies. In that light, the review proposes a restructuring of the services that are provided at Milestone House. There is to be an eight-bed residential unit, a palliative care outreach team and a day care service. However, the costing and siting of those services, which will replace the current service provision at Milestone, has still to be determined.

I share the trust's view that the new model is a responsible response to changing circumstances and that the trust, rather than a new provider, is best placed to deliver the changed programme of care. The review recommends that the services that are run at Milestone should cease by the end of the financial year 2000-01, provided that alternative respite services can be developed and implemented. One of the arguments for that change would be that money that is tied up in Milestone could be better deployed in an extension of combination therapies.

Although I certainly agree in principle with the desire to invest more in those treatments, which have been remarkably successful in recent years, that does not alter the fact that, in the judgment of many, the timetable for the closure of the hospice is far too short. For some people, the new drug treatments have come too late. It may be a problem for only a limited period of time, but those people, in my judgment, deserve the type of specialist hospice care that Milestone can provide. A time scale of two or three years would be far more appropriate for them than immediate closure.

A longer time scale would also enable further evaluation of the longer-term success of combination drugs and would recognise that while the introduction of new drugs has meant, thankfully, that AIDS and HIV sufferers are now living longer, they require a longer period of support. We must also acknowledge that, sadly, the new therapies and treatments do not work for everyone and that people may still require the type of specialist care provided at Milestone.

A longer time scale would give an opportunity to examine the issues in greater depth. I hope that Milestone House is chosen as the centre to deliver the new model of care. Staff at Milestone have the experience, ability and flexibility to deliver the service better than any new provider. The fact that no alternative site has yet been identified suggests that identification of a new centre may prove difficult to achieve within the time scale envisaged.

The staff at Milestone have been, in a sense, under review for the best part of three years. They are naturally anxious that the process be concluded as soon as possible and that Milestone's future be secured at least in the medium term. The staff accept that the service that they offer must change in the light of changing circumstances, but they believe that they have proved their adaptability, demonstrated by the expertise that they have acquired in dealing with hepatitis C as well as HIV and AIDS.

Geographically, Milestone House provides an excellent site for the services. It is only 20 minutes from the city centre and is readily accessible to patients who live outwith Edinburgh. For those reasons, I very much hope that the Scottish Executive will be prepared to recognise the valuable work that is done at Milestone and will seek to retain the services for the benefit of the country as a whole.

One method of ensuring that that happens is to ensure that the funding mechanism reflects Milestone's national status. Currently, 44 people from elsewhere in Scotland use Milestone, 23 of them from Glasgow. Among the correspondence that I have received on this subject since I lodged the motion is a most interesting letter from a nurse based at Gartnavel general hospital in Glasgow. She wrote to tell me about the disappointment felt by 10 patients from the Glasgow area who had been booked into Milestone House for one or two-week respite care periods in May. The service was withdrawn at short notice, leaving a number of the patients disappointed and two of them suicidal at the prospect of cancelling the period of respite care.

The nurse also told me that in recent months she had cared for three terminally ill patients for whom she had endeavoured, unsuccessfully, to find beds in hospices in and around Glasgow. The hospices had said that they would be willing to take the patients, but beds never became available and all three people died in the Brownlee centre at Gartnavel. She writes:

"My feeling is that fear and prejudice about HIV and AIDS still exists and that they were not offered a bed on these grounds. So there is no suitable alternative to Milestone."

The current review proposals would mean that the Lothian-based residential unit would be for Lothian-based residents only. That needs to be examined. I hope that the Scottish Executive will be prepared to take the matter up in discussions with Lothian Health, City of Edinburgh Council and Waverley Care Trust as part of a wider review of HIV and AIDS strategy.

All those who have cared for patients and clients at Milestone House, their families and staff look forward to hearing what the minister has to say in response to the motion.

I am happy to support David McLetchie's motion. As he said, Milestone House was first opened in 1991 to provide residential respite, palliative and terminal care for people with HIV-related illness. Since that time, great advances have been made, thanks to the advent of combination therapy. People who were expected to die a few years ago are still alive today. Life expectancy for HIV-positive people continues to improve.

Milestone House has adapted its service accordingly. Emphasis is put on providing respite care and support. Surely Milestone is the ideal setting for a period of respite. As David McLetchie said, it is only 20 minutes from the city centre for those who live in Edinburgh and five minutes from the bypass for those who live firth of the city. Let us not forget that 20 per cent of registered service users are from outwith Lothian. Members should make no mistake—it is a national facility.

Suggestions from the on-going review seem to favour offering respite in the community. However, imagine being an intravenous drug user, with all the implications that that carries: poor housing, chaotic lifestyle and social exclusion. Would anyone's idea of respite be staying in that situation, or would it be going to a place that is tranquil, where people offer support and understanding? I cannot put it better than the words of one young man who said of Milestone House:

"Your background doesn't matter in here, all the trouble goes as soon as you come in the door."

The truth is that, as a result of the prolonged review, that precious facility is in danger of withering on the vine. Thanks to medical advances, death is not an immediate prospect for many HIV-positive people, but they still have to cope with the stigma, rejection, social isolation and, more than anything, low self-esteem. Milestone House provides support, care and, above all, a sense of belonging. That is something that cannot be measured in monetary terms. Milestone House is an oasis, a place to live and grow.

I will close with the words of another service user:

"When my time comes, I don't want to be looking at concrete hospital walls and through the glass of a hospital window. I would like the privilege of dying in Milestone, surrounded by the wildlife, the trees and the greenery. I couldn't think of a better place to die. For my sake, and for those who come behind me, please support Milestone."

I thank David McLetchie for lodging the motion, thus giving members a chance to debate a very important national and local service.

We should acknowledge the work that has been done at Milestone House since it opened, the information provided by Solas and the support that has been given to the service by its contributors: first and foremost, the staff and supporters, including the families and the patients and clients. We must also acknowledge the funders, primarily Waverley Care Trust, but also City of Edinburgh Council and Lothian Health.

Everyone agrees that there is a need to review and reconfigure services for HIV and AIDS. As Kay Ullrich said, that is based on the happy fact that combination therapy has been successful. In 1986, there were 150 reported new HIV infections in Lothian and there were 80 deaths in a year. In 2000, the number of infections has come down to about 50 and the number of deaths has fallen to 13. The successes have impacted not only on death rates, but on the number of hospital admissions and on disease progression.

However, these are early days in the monitoring of the long-term impact of combination therapies and the needs that arise from that. There are differences in the way in which the disease progresses; some of the needs relate to dementia, which is induced by the illness, as well as other types of disease progression. The learning process is on-going in relation to the impact of combination therapies. Even the Lothian Health document says that the relatively recent introduction of combination therapies means that uncertainties remain as to their long-term efficacy. The same uncertainty remains about the long-term impact of those therapies. The Scottish Voluntary HIV and AIDS Forum compares the possible loss of Milestone House hospice to the closure of the London Lighthouse facility, which happened because the new combination therapies seemed to be working but was actually done in a hasty and ill-thought-out way.

Once a service such as Milestone House is lost, it is difficult to bring it back. We should think long and hard about how to reconfigure Milestone House to deliver the types of services that people need. Although those services are first and foremost about respite, they are also about working with people to give them the knowledge about how best to use the combination therapy drugs available. Without careful management, some of those drugs will lose their effectiveness.

Although some of Lothian Health's proposals should be welcomed, the questions for Waverley Care Trust and others are where and how those proposals will be delivered and how they will be funded. We all agree that it would be beneficial to have an HIV centre which is a single point of entry for information and services. Everyone wants enhanced day care services; however, we also want good respite services. There is much to be welcomed in the review and we should not throw the baby out with the bath water on this issue.

The Lothian Health document also says that reconfigured services could be delivered in a reconfigured Milestone House with new funding arrangements. That is the nub of many of David McLetchie's comments. I welcome the fact that we are asking the Executive to consider the hospice as a national service and to examine whether it can bring some stability to the funding for Milestone so that responsibility for funding does not fall on the three component funders.

Echoing the points made by David McLetchie and Kay Ullrich, I must say that the important thing is to ensure that we try to deliver services that allow people with HIV and AIDS to live and die with dignity. I commend the motion to the Parliament.

I congratulate David McLetchie on securing today's debate and Margo MacDonald on bringing the matter to the Parliament's attention. Although David and I disagree on many of the great issues of the day, issues such as the one under debate today rightly cut across party divides.

I also want to thank David McLetchie for his recent letter to me on this issue, which contained a briefing from David Johnston of Waverley Care Trust. That briefing was very useful indeed, and I am pleased to say that I will have a chance to discuss with staff the issues outlined in the document when I visit Milestone House on Wednesday morning.

As convener of the newly formed cross-party group on palliative care, I want to add to David McLetchie's comments by stressing the importance of hospices to such care. We recognise that palliative care aims to maintain as far as possible and improve quality of life for patients and their families. We also recognise that palliative care is not only for people who suffer from cancer, but for people with advanced heart failure, motor neurone disease and AIDS.

Like many others involved in the cross-party group, I know from experience the importance of hospices to people in their care, their families and their friends. Having visited a number of hospices such as St Andrew's Hospice in Karen Whitefield's constituency of Airdrie and Shotts and familiarised myself with the impressive Maggie's Centre in Edinburgh, I know the high level of commitment and dedication of the staff involved and wish to pass on my full support and thanks to them on behalf of all members in the chamber.

It is with that in mind that I have no hesitation in supporting David McLetchie's motion on Milestone House. Through talking to others with connections to the hospice, I am well aware of the valuable work carried out there, offering care and hospital support services to people with HIV and AIDS, affected carers and children.

I am also aware of the high quality of service offered by the hospice and of the expertise that has been built up there over the years. Indeed, on browsing the internet—something that politicians are all encouraged to do—I came across the Waverley Care Trust website. As its web address is quite long, instead of reading it out, I will pass it on later to any member who wants it. I was pleased to see that it had a 1999 profile.

In discussing the matter today, we must recognise that the needs of people with HIV and AIDS have changed since Milestone House was first opened, with fewer people needing terminal care for AIDS, principally due to the success of combination therapies. We must not forget, however, that there is more to Milestone House than terminal care. Palliative respite care, combination therapies, post-acute care and respite care for social, emotional, psychological and spiritual problems are also provided.

While the Parliament must recognise that it is appropriate that health decisions be taken at a local level, we must recognise that 20 per cent of Milestone's registered users are from outwith Lothian and that the wait for a decision since 1997 has not been good for the hospice, the staff, the service users and their families and friends. It would be inappropriate for this Parliament to dictate to those involved in the review. That said, however, I am sure that I speak for all members in calling for a speedy conclusion to the review while ensuring that full consultation with those involved with the hospice takes place.

It is important to maintain the critical mass of specialist multi-professional expertise that has built up at Milestone House. I urge Lothian Health, City of Edinburgh Council and Waverley Care Trust to work together to meet the changing needs of those diagnosed with HIV and AIDS and to fulfil the ambitions behind David McLetchie's motion.

It is important that a decision be reached as soon as possible. The uncertainty has had a bad effect on the staff at Milestone. The turnover of staff has been great and that has diminished the establishment's effectiveness.

Milestone should be viewed in a national context. It is one of the facilities that should be offered nationally. It is not a solution to everyone's problems as combination therapy does not suit everyone, but it is an important part of the overall provision. There has been a lot of investment in the place and it would be a foolish waste of resources if that investment came to nothing. Michael McMahon mentioned other hospices. If there are spaces in Milestone, the other hospices could use them. We need to build up a national network of places such as Milestone that cover other ailments.

It is important that we press the Executive to ensure that there is a rapid conclusion to this problem. Our nation has a great capacity for taking ages to decide things, during which time all sorts of unfortunate things can happen. I am happy to support David McLetchie and I welcome the cross-party support for this issue.

I have been aware of the work of Milestone House and Waverley Care Trust for many years and have visited Milestone House on a number of occasions and in a number of capacities, most recently last year as the Deputy Minister for Community Care. I have participated in a number of fund-raising events for Waverley Care Trust, although—unlike Margo MacDonald—I have never sung on its behalf, which is probably wise. As David McLetchie said, Milestone House is situated in my constituency. However, I must make clear the fact that it is as the Deputy Minister for Community Care that I speak today.

Milestone opened in 1991 as an 18-bed unit for men and women. It was developed as a resource to provide residential respite, palliative and terminal care for people with HIV-related illness. Interestingly, it was, I believe, the first of five AIDS hospices that were planned for Scotland but it was the only one that opened. It is designated as a nursing home, and the type and volume of the services that it provides are in response to the identified need and predictions for the course of HIV at the time.

That is true of the whole service package in Lothian for people with HIV-related illnesses, including other Waverley Care Trust initiatives such as the Solas resource centre and the clinical care that is provided by the NHS. The fact that those predictions were not realised has led Lothian Health, City of Edinburgh Council and Waverley Care Trust to review those services.

Through the effective communication of prevention messages to vulnerable groups, and through the introduction of new combination drug therapies, many fewer HIV patients develop AIDS. People who have AIDS are now living with the disease rather than dying from it. In 1999, the number of new HIV infections was 157, the lowest number since 1994. In 1999, the number of diagnosed AIDS cases—and I think that Margaret Smith cited this figure—was 54 compared to 126 in 1993.

When Milestone House opened, it was also thought that HIV was more easily communicated than has proved to be the case. Therefore, at that time there was a perceived public health case for isolating AIDS patients. As the number of new AIDS cases has reduced markedly, and is likely to remain at that level, the case for sustaining a separate hospice is much weaker. At Milestone House, the number of people who require palliative care has dropped from more than 25 a year to around seven a year, and in the first nine months of 1999 there were only three deaths there, many fewer than there had been in previous years.

That is good news, but is no cause for complacency. Any let-up in the prevention and education work would run the risk of allowing such welcome trends to reverse. That is why we continue to invest in HIV prevention. The group that is reviewing HIV health promotion will report to me in the next few weeks. However, the changes in the understanding of the epidemiology of AIDS mean that health and social care provision must be reviewed and that the delivery of services must be modernised. With that in mind, Waverley Care Trust and its two funding partners have carried out two major reviews in recent years. There has not been a rushed review or consideration.

It is the responsibility of Lothian Health and City of Edinburgh Council to ensure that appropriate provision is made. They must ensure provision for those for whom combination therapy is ineffective or inappropriate, and they must ensure that that provision delivers both respite and palliative care as well as the range of other support that is required.

The recommendations from the second review since 1998, which are being considered, propose, as David McLetchie said, that services that are currently provided at Milestone House should cease on 31 March 2001, provided that appropriate alternative respite resources have been developed and put in place to ensure the minimum disruption to users. That recommendation was made on the basis that a more flexible model of respite care provision will be required to cater for the changing needs of different populations that are living with HIV—gay men, drug users and people who have been infected via heterosexual transmission. In practice, the new service means better targeted respite support along with community-based services that are provided at home.

The proposed new service configuration was described accurately by David McLetchie, and I do not intend to go through it again. The service must be viewed alongside prevention and education work and alongside the clinical health care that, in Lothian, now requires a budget of more than £2.6 million for HIV and AIDS-related medicines.

Lothian Health and the local authority are actively trying to identify a suitable site for this new type of facility, the aim being to find a site that is more readily accessible to users than Milestone House. I echo some of the comments that have been made about the tranquillity of the current site. However, the appropriate site for the delivery of the service must be a decision for Lothian Health, the local authority and Waverley Care Trust. I repeat that it is my understanding that existing services at Milestone will continue until the new service provision is established. That is clearly an important assurance to give.

The new services will have to be funded according to the appropriate criteria for health and social work services. Waverley Care Trust will, in due course, agree the funding package with its partners. Those services are delivered by a partnership of Lothian Health, the council and the voluntary sector provider, which is Waverley Care Trust. I expect that to continue to be the case, but the detail of the package will depend on the configuration of services, which is rightly a matter for the partners involved.

I understand that the review team, which included Lothian Health, City of Edinburgh Council and Waverley Care Trust, is content with the outcome of the review. Last month, the council adopted the recommendations in principle, and Lothian Health will consider the review at its board meeting next week. People have called today for a swift conclusion to the review; I think that the demands in those calls will be met.

If the case for a specialist hospice provision in Lothian is not made, I do not think that the case for a national hospice in Edinburgh is made either. Research points to people preferring to remain in their own homes and to be as independent as possible. The thrust of thinking in community care generally is against services that take people far from home and family. However, I take the point that Milestone has been used by people from outside Lothian. Currently, the number of residents of Milestone from outside Lothian is around 11 per cent—one or two residents at any one time.

I also take the point that the residents have to have access to a proper mix of services. In that light, I have asked my officials to check with all health boards and their local authority partners to ensure that, like Lothian, they have in place a proper mix of service provision for HIV and AIDS sufferers. It is their clear responsibility—as it is the responsibility of Lothian Health in Lothian—to have the right mix of services available to meet the needs of the users of those services. Needs change, and so do services. However, the principle of meeting needs does not change, and that is the principle to which we must hold as we consider this change in service configuration.

Meeting suspended until 14:30.

On resuming—