Chamber and committees

Good morning, panel, and thank you for joining us. I want to return to the question that Willie Coffey asked about the trends that you outlined. Has there been any national analysis of what trends there have been since the SPSO took over the role of standardising complaint procedures in 2010?

Perhaps one of the greatest changes that will affect disabled people and their ability to realise their right to independent living is the establishment of the national care service. In its briefing for the debate, Inclusion Scotland outlined a number of concerns, specifically saying that the Government’s approach to shaping the governance of the national care service is not

“in the spirit of co-design”.

Where is that concern being taken into account by ministers?

I apologise for the delay in my attendance in the chamber.

I will open with the words of Natasha Hamilton, daughter of Anne Duke, who gave evidence last month to the Scottish Covid inquiry. Natasha told the inquiry that she did not have a chance to say a final goodbye to her mother because she had to “wait her turn” while her father and sister were in Anne’s room. Even though the family knew that Anne was hours away from passing, Natasha was not able to enter the care home until a certain point. Natasha told the inquiry:

“I had to take a PCR Covid test. I got to my mum’s room, I opened the door and my dad was frantic and I looked at my sister and my sister just nodded at me. I’d missed being with my mum by seconds because we had to stagger who was coming into the care home.”

As campaigners have said, the practices that were put in place during the pandemic were arguably far worse than the virus itself because they denied many elderly and vulnerable Scots the comfort of their loved ones in the final hours of their lives.

Throughout the pandemic and since, I have worked with and supported families who want to tell their own stories, and I take the opportunity to pay tribute to Anne’s husband, Campbell Duke, and her daughter, Natasha Hamilton, for the campaign that they have led to see Anne’s law put in place to ensure that people living in care homes have the legal right to visits from loved ones and that there will be shared decision making about care if any restrictions have to be put in place in future.

It has become common for ministers and officials to talk about taking a human rights-based approach. Members from across the chamber agree with that as we respond to questions and discuss future policy developments, but we must see what that means at the heart of policy. I want to look at some of the evidence that the Covid inquiry has heard about times when that was not the case. Care home residents were neglected and, in many cases, were left to starve because of the restrictions that were imposed during the Covid pandemic.

Today’s debate is not about the Scottish Government’s handling of the pandemic; it is about the lessons around human rights, which we should learn. This has not been mentioned, but six in 10 of the people who died with Covid-19 in Scotland were disabled people. I wish to return to the decisions that were taken during the pandemic. Three years on from the restrictions being put in place, many of the people who were in care homes during the pandemic are not alive today. We should always bring our discussions around human rights policy back to the stories and experiences that their families and friends wish to ensure are never forgotten.

One example is the case of my constituent, Mr Rodger Laing, who, against the wishes of his family, had his power of attorney overruled. He was transferred from Midlothian community hospital to a care home. Mr Laing developed coronavirus and died from it. His daughter Gail has said that she

“will never be able to forgive them”

for her dad, and that

“someone needs to be held accountable.”

As part of the Covid-19 response by Scottish National Party ministers, 1,090 additional care home places were purchased, and in many cases patients were moved without the shared decision making of their families.

I absolutely am. The cases that I am referring to relate to individuals who had complex needs and care needs during the pandemic. Indeed, the first line of my amendment makes a point about the need for investigations into

“the failings of Scottish ministers during the pandemic”

around human rights. It is important that we consider that today.

Another constituent of mine who also raised concerns, specifically around human rights breaches, was Heather Goodare, who had a “Do not attempt cardio resuscitation” notice placed on her during her stay in hospital. She did not discover that until she had left hospital, when she found it buried within her notes. Her daughter Roseanne had refused to sign a “Do not resuscitate” order when she was first asked to, when her mother was admitted to hospital.

Campaigners are raising such concerns because they want our human rights legislation to ensure that vulnerable patients across Scotland do not face such practices in the future. I have raised those points with former and current First Ministers, as we have not had a full investigation by Government into those practices that took place during the pandemic. There are many examples of cases in which ministers need to consider what were arguably breaches of human rights in Scotland during the pandemic.

We also need to consider people having their care packages suspended—in particular, young people with disabilities having their independent support packages removed or cut and having to move home with their elderly parents. The Government motion states:

“That the Parliament notes the ambition for Scotland to be a world leader in both the legislation for, and realisation of, human rights”.

I agree, but we need to take this opportunity to consider the consequences of a pandemic and human rights violations.

Last Sunday marked the United Nations international day of persons with disabilities, which aims

“to promote the rights and well-being of all persons with disabilities in all spheres of society and development”

and

“To increase awareness of persons with disabilities in every aspect of political, social, economic, and cultural life”

across the world. The disability employment gap in Scotland remains too wide, as I think we all recognise. In 2022, it was 31.9 percentage points, with 82.5 per cent of non-disabled people in employment, compared with 50.7 per cent of disabled people.

The Government motion

“notes the recent consultation on a Human Rights Bill to incorporate economic, social and cultural rights ... into Scots law”.

I think that there is cross-party welcome for that opportunity. Many colleagues across the chamber have explored where they could introduce their own bills in this area. I note, in particular, the work that Pam Duncan-Glancy and Jeremy Balfour have done on members’ bills to do just that and to advocate and advance rights for disabled people in Scotland. Ministers do not necessarily seem to want to engage with bills from Opposition parties in this area, but I hope that today’s debate presents an opportunity for ministers to think again on that.

Members who are outside the Government SNP and Green parties want to make progress and are doing so themselves with members’ bills but have not had the necessary engagement from the Government. It perhaps does not need the numbers, but there are ideas from across the chamber that the Government is missing. As the Scottish Human Rights Commission’s executive director, Jan Savage, stated:

“The Scottish Government has not done enough to ensure disabled people’s human rights are fully realised and we are pushing for protection of disabled people’s rights to employment, independent living and an adequate standard of living”.

I hope that the minister, who is in a relatively new role, will take on board the opportunity that other members present with their members’ bills.

In the previous session of Parliament, I proposed Frank’s law—a bill to extend free personal care to people under 65. Parliament united and helped to deliver that policy, but we still need many councils to follow through to deliver it in full. I hope that the Scottish Government will choose to work with Parliament to make progress on all human rights issues in this session, and that the Government will work to deliver in full Anne’s law, as I outlined earlier, and Calum’s law, which is about young people in disabled services—Daniel Johnson is working on a member’s bill on that.

Evidence and experience show that, when barriers to inclusion are removed for them, people with disabilities are empowered to fully participate in our society, and our entire community benefits. Barriers faced by persons with disabilities are, therefore, a detriment to society as a whole, and accessibility is necessary to achieve progress and development for all. I hope that the debate gives us an opportunity to consider many of the things that still need to change in Scotland.

I move amendment S6M-11537.1, to insert at end:

“; expresses concern over the number of families, children and disabled people in temporary accommodation; calls on the Scottish COVID-19 Inquiry to investigate the failings of Scottish ministers during the pandemic such as instances of disabled people being moved out of hospital without family decision-making, and disabled people having their care and independent support packages cut or suspended, and further calls on the Scottish Government to ensure that all those in receipt of Adult Disability Payment and Personal Independence Payment are also entitled to claim Social Security Scotland’s Winter Heating Payment, to deliver the Coming Home Implementation recommendations for young people with learning disabilities and complex care needs being held inappropriately in hospital settings, to support and deliver Anne’s Law and Calum’s Law, and to fully implement and deliver Frank’s Law.”

The cost of running vital medical equipment such as a ventilator can be £26 a month. A humidifier can cost £15 a month, oxygen concentrators can cost £61 a month and an air mattress can cost up to £22 a month. The former First Minister said that she would work to ensure that those costs would be covered. Has that happened?

I thank the minister for the advance sight of his statement.

Today will mark the start of a 10-year time bomb for more than half of Scotland’s home owners. SNP and Green ministers have come to the chamber today with a timescale but not a plan for how they will achieve what they have set out.

There is nothing in the statement today to provide reassurances that SNP and Green ministers understand the true costs that will face home owners the length and breadth of Scotland. Estimates have suggested that it may cost more than £30,000 to achieve the minimum energy efficiency standards in a rural property for example. What estimation of the costs of compliance for the average home has been undertaken?

I thank Willie Coffey for securing the debate and welcome the people who have joined us in the public gallery. I also pay tribute to Clare Adamson, who has committed to bringing the debate to the chamber in all the time that I have been in Parliament. I thank her for the opportunity in the past, because the debate has become an important point for us as a Parliament to come together and consider the issues.

Many members who are in the chamber will have personal knowledge of someone who has suffered from pancreatic cancer, whether a family member, friend, colleague or constituent. I am always moved by people who contact us beyond the debates.

I thank colleagues for mentioning John Scott and the speech that he made about his personal experience in one of the debates. I saw him at the Royal Highland Show this year, and he is doing well. He always emails us to keep us on our toes in Parliament. It is always good to see and hear from John. I thank colleagues for their comments.

As Willie Coffey outlined, the real cruelty of pancreatic cancer is that it is especially hard to detect. That, allied with the lack of timely treatment and care, means that the chance of best quality of life is significantly lowered for many people who discover that they have it, which often happens in A and E.

Just under 900 people a year are diagnosed with pancreatic cancer in Scotland, and pancreatic cancer survival has not shown any real improvement over the past 50 years. In Scotland, pancreatic cancer is the deadliest common cancer, with more than half of people who are diagnosed dying within the first three months, and seven out of 10 people receiving no treatment.

In our debate on the subject last year, I raised a number of issues on decisions to treat and the call for long-term funding to embed the learnings of the Scottish diagnostic pathway improvement project in our NHS. It is good to see some of the work that is happening around that. I was pleased to attend, with others, the Pancreatic Cancer UK drop-in that was held in Parliament recently, and to speak to a number of patients and family members about the issues that they wanted to raise and the changes that they want to see.

Pancreatic Cancer UK has worked with experts across the field to develop the faster, fairer and funded optimal care pathway, which will inform how best to diagnose, treat and care for pancreatic cancer patients. However, we still need far more work to be taken forward on decision making around decision to treat, and cancer workforce planning is critical to that. Funding for specialist pancreatic cancer roles in every health board across Scotland and the delivery of the workforce plan in the Scottish Government’s cancer plan need to be the top priorities if we are to achieve what we want to see. I very much welcome the fact that the Scottish Government has committed to improving pancreatic cancer survival, but we now need to see what that will look like in reality within the plan. That will require action and not just words if we are to ensure that improvements become a reality.

It is hoped that, through implementation of the optimal care pathway, significant progress can be made to improve treatment for people, with—importantly—more decisions to treat being made. However, if this work is to progress significantly, we need to see something that is an opportunity for Scotland—the doubling of treatment pathways and improvement in survival rates. That could see around 400 more people in Scotland living longer and better lives over the next five years.

Although we have to be honest—this is always an honest debate—that the current statistics paint a challenging picture, we know that early diagnosis and treatment can improve the lives of people with pancreatic cancer. Scotland has an opportunity to lead the way in the United Kingdom in improving treatment of pancreatic cancer and survival rates. I believe that, with focus and determination, we can help to move Scotland and the UK from being one of the worst-performing countries to being one of the best.

Every member in the chamber has a duty to their family, their friends and their constituents to hold the Government to account on this and ensure that we stand by the commitments that we have made to try to improve the survival rates. As others have said, time is a luxury that those who are suffering from pancreatic cancer do not have, so we must act now and make that a priority.

I have spoken in every debate that we have had on the subject since I was elected, because I know that we can make a difference. Every campaigner I have met, every individual I have worked with and every family that has lost a loved one to pancreatic cancer has demanded that we do better. As Clare Adamson said, when we meet campaigners, it is an odd feeling, because we come away with hope even though they have had such a negative time. They may know that our work is not going to make a difference for their loved one, but they are demanding that we make a change for other people’s families and loved ones.

I hope that today’s debate shows that we always have all those people in mind and that we want to continue to work to improve treatment and pathways, and above all to celebrate the lives of people we have lost to pancreatic cancer. They are all individuals we need to celebrate, and I hope that today’s debate gives us the opportunity to do that.

Throughout the time that we have been looking at the bill, I have raised the issue of exemptions for individuals. The fact is that this is more of an accommodation tax than a tourist tax and some groups of people—those who are staying in hotels while they visit family members in hospital, for example—should not be captured by it. First, does COSLA support exemptions, and secondly, how could such exemptions best be delivered? The bill includes a section on voucher schemes, but that is the only detail that the Scottish Government has given.

Has the Government been in touch with the Manchester scheme, which is the only scheme that is currently operational in the UK?

Okay. Thank you.