Chamber and committees

In 2020, I think that the Government received £97 million of Barnett consequentials for remediation. You are saying that that money is still available for the work?

Good morning and welcome to the 29th meeting in 2024 of the Finance and Public Administration Committee. We have received apologies from the convener, so I will chair today’s meeting in his place. We are joined by Audrey Nicoll, who, in the convener’s absence, is attending as a substitute member.

I am pleased to welcome Craig Hoy as a new member of the committee. Before I invite him to declare any relevant interests, I record the committee’s thanks to Jamie Halcro Johnston for all his hard work on the committee.

I invite Craig to declare any relevant interests.

Were those figures from 2021?

Thank you, cabinet secretary. I will begin the questioning, before bringing in other members of the committee.

There was a mixed response to the consultation; I think that eight respondents were in favour of the proposal, six were against and two were of no position. I would like you to respond to a couple of the queries that were raised by members of the public. First, some people felt that the order might set a precedent for people to be taxed twice, and others believed that some house builders might be asked to pay when their work would not require remediation. How do you respond to those concerns?

I will take some questions from committee members now.

That would be appreciated, cabinet secretary.

You are looking to move to 100 projects in 2025-26.

Good morning, convener.

I greatly appreciate being afforded the opportunity to address the committee. This is the first time that I have spoken to the committee about the petition, and I would like to provide an update on some of the developments from my involvement with the petition.

My involvement relates to constituents who are living with such conditions and have faced challenges in accessing treatment and support. That includes some who have waited 20 years for a diagnosis. I have lodged a motion for a members’ business debate on the subject, which has gained cross-party support, for which I am grateful. I look forward to having that debate in the chamber when it is scheduled.

Last month, I was pleased to host a round-table meeting in the Parliament with Ehlers-Danlos Support UK and researchers from the University of Edinburgh, Kathryn Berg and Dervil Dockrell, who shared the findings of their recent research into EDS, which revealed that people are waiting decades for a diagnosis, with a large proportion of those people either leaving Scotland to access healthcare in England or paying for private treatment. That demonstrates that there is a clear gap, as that research testifies, in the services that are available in Scotland for people living with HEDS and HSD. For that reason alone, I urge the committee to keep the petition open for further consideration, and I will come on to suggest some potential actions.

Ehlers-Danlos syndromes are a group of 13 heritable connective tissue disorders that are caused by genetic changes that affect connective tissues. Each type of EDS has its own set of features, but common features of various types of EDS include joint hypermobility, skin hyperextensibility and tissue fragility. That can cause a person’s joints to dislocate and their skin to be stretchy. They bruise easily and their wounds can take a long time to heal.

I have heard powerful testimony from constituents on living with such conditions. They have talked about being in constant pain, living with reduced mobility and having a limited quality of life, as well as the impacts on their mental health.

The most common type of EDS is hypermobile EDS, which accounts for about 90 per cent of the cases that are being considered today. There are various statistics on the prevalence of such conditions. The convener referenced some of them in his opening remarks. As he did and as colleagues from EDS UK have done, I point out that there is a crucial distinction between rare and rarely diagnosed. One study found that one in 500 people had a diagnosis of HEDS and HSD, so the matter certainly requires more investigation.

The Scottish Government’s submission on 12 October 2023 stated that the Government was

“considering what additional stakeholder engagement activities may be required throughout 2024.”

It also talked about

“the Rare Disease Implementation Boards’s intention to hold a number of ‘involvement meetings’ early in 2024”.

However, as it states in its latest submission, EDS UK does not feel that those meetings are an appropriate avenue for developing a specific care pathway for EDS, as they cover a range of rare diseases.

The response from the national services division on 13 October 2023 stated:

“The ongoing diagnostic, treatment, and care needs of hEDS and HSD patients are the responsibility of individual Health Boards”.

However, given the experiences of my constituents that I have highlighted and those that have been highlighted through research and the work of EDS UK, that system is simply not working at the moment.

The petitioner’s most recent submission calls for

“A pathway for NHS diagnosis and care for hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders ... NICE/SIGN guidelines for Ehlers-Danlos syndromes and hypermobility spectrum disorders ... A coordinated, multidisciplinary approach to diagnosis and care for people with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders”

and, crucially,

“Support and training for healthcare professionals to deliver this.”

I commend the staff and volunteers at EDS UK for their continued determination on the issue.

I note that progress has been achieved in other United Kingdom nations to date. For example, in May, as the convener said, NHS Wales committed to co-creating a hypermobility pathway for primary care to help GPs to diagnose and manage the conditions. Colleagues at EDS UK have met community health pathway teams in Wales, which has helped to progress work on that pathway. Research and lived experience have shown that GPs are often not aware of such conditions or the potential treatment options that are available. Publishing a pathway would give clearer guidance to GPs and lead to improved patient experiences. At the round-table meeting that was held in the Parliament, there was a clear desire from the general practitioner workforce to have such information available to them.

As far as I am aware, we do not have community health pathways in Scotland, but there is the possibility for some collaborative work across the two nations of Scotland and Wales in that regard. I suggest that the committee might want to contact NHS Wales to find out more detail on the progress of that work to date and how it might be applicable to Scotland.

Good afternoon, Deputy First Minister. The evidence that the committee has received so far indicates that many stakeholders see the national performance framework as a way of trying to break the short-term cycle of politics in order to gain a longer-term view. Does it help in that regard?