Chamber and committees

Does the cabinet secretary agree with me and the charity Zero Tolerance that what is required to tackle the issue is not greater bureaucracy, Government directives or national frameworks, but action?

When the minister was out visiting the various hospices, I was at the Marie Curie hospice in Fairmilehead. They mentioned a pilot that has recently taken place in England, where the equivalent of NHS 24 has a button to press to enable families at home to access out-of-hours advice quickly, rather than waiting in the often lengthy NHS 24 queues to get a district nurse out. Has the minister considered innovative solutions to help such people?

I will do a George Adam. Moved, Presiding Officer.

It is a privilege to be able to bring this debate to the Parliament. Not that long ago, back in November, I hosted, on behalf of my colleague Miles Briggs, a round-table event on the dying in the margins study from Marie Curie and the University of Glasgow. It was heartening to see such strong cross-party support at that meeting, and I am delighted to see such strong representation from members on all sides of the chamber today, too.

Ahead of the debate, I have been working with Hospice UK, Marie Curie and St Columba’s Hospice Care to understand more about the key issues that hospices face, particularly the problems surrounding funding. I thank them all for their support in preparing for the debate.

Why are we here? First and foremost, it is because the funding of hospice care is unsustainable. Hospices face an expected deficit of £16 million this year, as statutory funding has not been keeping pace with historical and recent spiralling costs. In particular, the cost to hospices of matching the national health service pay awards in order for pay to remain fair and competitive for their staff has been highlighted to me as an issue.

With the demand for palliative care increasing and the health and care system under significant strain, the support that charitable hospices provide has never been more crucial or critical. Hospices provide vital support to general practitioners, district nurses, care homes, hospital teams and social care through training and education, specialist clinical expertise and strategic leadership.

Hospices bring more than £60 million of charitable funding into the local health and care system each year, and we should not hide from the fact that they lessen the demand on our statutory services by reducing the number of emergency admissions, reducing the length of stays in hospital and supporting people to stay at home. They are, therefore, worth every penny, as they provide significant value for money.

The harsh fact is that the number of people in Scotland who need palliative care is predicted to rise by 20 per cent by 2040. In addition, they will need more complex care, further adding to the pressure on the already overstretched NHS. Charitable hospices are a key part of a cost-effective solution to those pressures, but they can do their work only if the funding and the hospices themselves are sustainable.

Hospices are struggling to stand still, let alone invest in responding to the future challenges that they face. Current funding arrangements do not support hospices to innovate and grow their services. In Scotland, there are 16 charitable hospices—14 for adults and two for children and young people. St Columba’s Hospice Care and Marie Curie hospice Edinburgh, along with Marie Curie’s hospice care-at-home teams, provide hospice care across Lothian. In November, I had a very informative visit to the Marie Curie hospice at Fairmilehead. I am ashamed to say that, in all the years that I have been in this world and living in Edinburgh, that was the first time that I had been there.

In 2022-23, about 8,815 people died in the Lothian region, and 90 per cent of them had a palliative care need. Across the region, 4,060 visits were made to 672 terminally ill people by the Marie Curie hospice care-at-home team. Marie Curie hospice Edinburgh and the West Lothian service supported a total of 1,690 patients through their in-patient, out-patient and community and day-therapy services.

I think that a lot of people have a preconceived idea of what hospice care is and what a hospice is all about. They just see a building and think only of rooms and beds and people being there to die. However, that cannot be further from the truth. Most of Marie Curie’s work is done in the community, with the majority of hospice care delivered beyond the hospice buildings, out in people’s homes and in the community. Hospices give people the option to die with their friends and family in their own homes, supported by teams of experts.

Marie Curie has a fast-track team that helps people with tasks such as washing, caring and showering as they get close to the end of their life. Crucially, that keeps them out of acute hospital settings. The team is essential to keep people in the right place, and it also offers family support to relatives.

I would like to touch on the work of St Columba’s Hospice Care in Edinburgh. In March 2023, it began a trial of a groundbreaking new virtual ward service. As far as we have been made aware, it is the first hospice in Scotland to roll out a development of that kind. The new service across Edinburgh and East Lothian provides patients and families with an alternative model of care, and it allows patients to be fully cared for in their own homes or in places of residence towards the end of life. The care and expertise that the team provides allows patients to remain at home with a very high level of support, which would otherwise require in-patient hospice or hospital-setting care.

The cost to the health and social care service of caring for people in the last year of their life is vast. Almost one in three people in Scottish hospitals are in their last year of life, and 95 per cent of people in Scotland use NHS unscheduled care services in the last year of life, which represents a total cost of nearly £190 million. That is why hospices are crucial.

In 2022-23, hospice care providers made more than 123,000 visits to people’s homes to deliver vital support. As I stated earlier, hospices provide vital support to GPs, district nurses, care homes, hospital teams and social care through their training and education, specialist clinical expertise and strategic leadership. They also bring more than £60 million of charitable funding into the local health and care system each year.

Earlier this week, the Minister for Public Health and Women’s Health attended a round-table event on hospice funding. I heard that, rather disappointingly, the minister opened the meeting by saying that the hospice sector’s call for remedial funding to address the £16 million deficit that the sector faces over the next three to five years is unaffordable. The minister also said that that meeting was the “start of the discussion” and that it would feed into other meetings that are due to be held soon. However, there is no clear timeline for next steps.

I hope that this debate will go some way towards shaping the minister’s thinking and that it will get her up to speed with the invaluable role that hospices play in our society, as our population ages and as people’s needs as they approach the end of their lives become increasingly complex.

In conclusion, I think that we can all agree that a new national funding framework for hospice care is vital to ensure the on-going sustainability of the sector and to allow charitable hospices to continue to support the NHS and provide high-quality palliative care to people in the Lothian region and across Scotland.

The minister speaks of the need to reduce complexities, and he will be aware of the recommendations from the recent report on college regionalisation. In his statement, we heard of the need to ensure that more investment supports learners while ensuring that funding makes the greatest impact. Despite that, he made no reference to the disparity in funding between university and college students, with the latter receiving £2,500 less investment per person. Will the minister guarantee parity of funding between university and college students?

The use of mobile phones has been highlighted as one of the most frequent and disruptive behaviours in schools. Lisa Kerr, headteacher of Gordonstoun, has stated:

“Teenagers rarely thank adults for placing boundaries, but we will never forgive ourselves if we don’t act now.”

The evidence is there. For the sake of our children’s futures and our teachers’ wellbeing, will the Deputy First Minister commit to taking immediate steps to ban and restrict mobile phone use in our schools as soon as possible?

The use of mobile phones has been highlighted by secondary school staff as one of the most frequent and disruptive behaviour issues in class. In Edinburgh, the headteacher at the Royal high school has taken the opportunity to strengthen its mobile phone policy that devices are not permitted to be used during the school day, and that policy is being strictly enforced. As a result, there has been a marked improvement in pupil engagement, with pupils talking more and being less heightened about what they are missing on their devices. Does the cabinet secretary agree that a consistent and enforced mobile phone policy that restricts their use is vital if we are serious about tackling behaviour issues in our schools?

I am glad that the cabinet secretary mentioned capital. The First Minister committed to a new eye pavilion when he was Cabinet Secretary for Health and Social Care, yet the eye pavilion is still in a building that has been condemned. The Royal Edinburgh hospital is still only in phase 1 of a three-phase plan. The national treatment centre at St John’s is supposed to be a national priority. A new sterilisation unit must be built. My constituents in Lothian are asking where those things are. They are all projects that have been promised in the past. I am not asking where the money will come from—I am asking where the money has gone.

The inability to define that formed part of the crux of the challenges that we faced regarding the accuracy of the financial memorandum. We know now—and we already knew—about the challenges faced by young people with additional support needs who are desperate for a diagnosis and about the waits that are required.

We felt that the bill would introduce conflict into an already cluttered legislative landscape. The committee heard that many children and young people, as I have just said, face long waiting times for diagnoses, and that some young people do not wish to pursue a diagnosis or view themselves as disabled or as having a disability.

For those reasons, the committee is concerned that the bill would place a statutory duty on local authorities to provide transition plans to disabled people and young people, but with a lack of clarity on how they would identify the eligible children in the area.

Worryingly, we heard that the current legislation has not had the positive impact that was envisaged. Many witnesses described it as complex, cluttered and difficult to navigate for young people and their families.

Several stakeholders highlighted local authorities’ poor deployment of co-ordinated support plans, despite their statutory nature. Many stakeholders spoke about the considerable difficulties that are faced by those who work to support young people in their transition to adulthood, with extreme pressures on resources in local authorities and health and social care systems, and the precarious nature of funding in the third sector.

We heard about issues around organisational cultures, particularly regarding the differences between children’s and adult services and the difficulties with information sharing. We do not believe that the bill would resolve those issues with resourcing or the interactions between children’s and adult services. However, we agreed that urgent action must be taken to address those issues, and the Government must ensure that that happens.

I have not had time to cover all the issues that were raised during our scrutiny of the bill, but I look forward to hearing from other members of the committee during the debate.

The Education, Children and Young People Committee supports the aims behind the bill and commends Pam Duncan-Glancy for bringing the bill before us. However, for the reasons that were set out in our report and in my comments, we were not convinced that it should progress beyond stage 1.

I agree. We have found many times that the people who are having an impact and making positive changes to disabled people as they transition into adulthood are the individuals who take leadership roles in their communities.

I thank the Delegated Powers and Law Reform Committee—I bet that it does not get many thanks—and the Finance and Public Administration Committee for their work in scrutinising the bill and for sharing their conclusions and recommendations.

Given the complexities involved in the bill, we took the unusual step of writing to both the Government and the member in charge with our findings, seeking a response before finalising our report. I thank the Government and Pam Duncan-Glancy for their helpful and extensive responses.

I would like to say at the outset that the members of the committee were not convinced that the general principles of the bill should be agreed to, with the exception of Martin Whitfield, who attended as committee substitute for the member in charge. Today, I intend to set out briefly some of the reasons why the committee came to that conclusion. I want to be clear, though—and I cannot reinforce this position enough—that we argued that doing nothing in relation to improving outcomes for disabled children and young people in their transition to adulthood was not an option. We were extremely concerned when we heard evidence of the poor experiences of transitions for many disabled young people. We agreed that things must change, and they must change quickly.

The bill requires the Scottish Government to introduce and implement a national transitions strategy for improving transitions to adulthood for disabled children and young people. It also says that there should be a transitions plan for every disabled child or young person. Going from what we heard, the committee agreed that a national transitions strategy was needed. Importantly, we were aware that the Government was already working on it, so we pressed the Government for a committed timeline and further information on its development.

We were deeply concerned to hear that young people and their families were not always being listened to by professionals. Some young people told us that their transition was often built around what people thought was right for them, rather than what they wanted to do. That is not acceptable.

The committee recommended that the experiences of those who have been through transitions should be at the heart of the design of any national strategy. That should help to ensure that negative outcomes are avoided and that a person-centred approach is built on.

The Government has now published its statement of intent, which summarises its research and engagement on the strategy and sets out what the Scottish Government should focus on now.