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So, an extraordinary amount of time.

Of course it is.

That would be useful. A response to a freedom of information request that was published on 19 September this year set out some of the figures that you have just provided and said that works to mitigate or remediate risk have started on five properties. Unfortunately, the work to remediate properties has not been completed on any of the 107 properties that are involved in the cladding remediation programme. I see that Stephen Lea-Ross may want to qualify some of that.

I appreciate that.

It is seven and a half years since the tragedy at Grenfell and all those lives being lost and people have been living with concerns since then. It does not feel as though we are moving at great pace. I understand the challenges in passing the legislation and wanting to get the framework right. However, you released figures on 9 September saying that the Scottish Government has spent £9 million on cladding remediation work. Is that correct?

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.

—because they have been very clear with the committee that that is an extremely concerning deficit in the way in which the budget is constructed.

Will you provide a pay policy this year?

That sounds as though you are not going to produce a public sector pay policy. We have not had one for the past two years. The SFC has come to the committee and said that it expected to have it and that it is very disappointed by the fact that it has not had it. Is there anything else in your agreement with the Scottish Fiscal Commission that you do not intend to provide it with this year?