Public Petitions Committee

Meeting date: Thursday, May 24, 2018

Official Report 355KB pdf

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New Petitions

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Hidradenitis Suppurativa (Specialist Support) (PE1682)

The second item on the agenda is consideration of new petitions. The first new petition for consideration is PE1682, by James Jamieson, on access to specialist support for hidradenitis suppurativa—HS—sufferers in Scotland.

The note that has been prepared by the clerk and the Scottish Parliament information centre provides some background on the condition and explains that there is no cure. It explains the treatments that are typically available and are used to treat the condition, and it mentions the specialist clinic at Guy’s and St Thomas’ NHS Foundation Trust in London.

The briefing provides some information on research and guidelines and notes that there is no published Scottish intercollegiate guidelines network guideline on the condition. It also includes a note on an informal meeting that Rona Mackay and I had with the petitioner in April.

Members may have received recently a paper by AbbVie with the findings of a survey that it recently conducted with HS sufferers in Scotland with the purpose of understanding not just the impact of living with HS on an individual’s health, but the wider impact on their day-to-day living.

Do members have comments? Rona, do you want to say something about our meeting?

Yes. We had an interesting meeting in which Mr Jamieson explained the severity of the condition and the extent to which it affects his day-to-day life. He talked about the lack of public awareness, and he feels that there is not enough specialist knowledge north of the border. That is the nub of it.

One thing that struck me was that he has been supportive of other people who have suffered. He said that a lot of people do not want to talk about their condition, that they feel quite isolated by it and that, when they go for help, they are perhaps treated with less sympathy than they are entitled to because the people who deal with them do not have enough specialised understanding of the condition. He said that people need to know more about it, but also that there might be a way to bring people with expertise together in a specific clinic so that people can go to one place where people are aware of the condition. He gave examples of people being treated quite dismissively and told that the problem is that they are overweight or they smoke too much when, in fact, the condition is chronic.

We had never heard of the condition, which says something in itself. Rona Mackay had no awareness of it, and I think we were both quite taken with the massive impact that it has had on Mr Jamieson’s life. He described other people’s experiences of the effects on their family life and community life, as well as how it affects their ability to work. They feel that, when they look for help, folk are not sufficiently alive to what they experience.

Mr Jamieson has started a support group for fellow patients, which is difficult to run at times when he is not well. He is keen to get some structured support for the condition.

I am struck that there is no SIGN guideline on the condition. That seems to be a recurring theme in some of our work around the medical profession and its understanding of certain conditions. This petition seems to be another example. That almost brings me to the conclusion that we have to ask our educators whether we are informing our medical staff about such conditions. If there are no SIGN guidelines, how on earth are the conditions to be treated? How are we to ask our general practitioners to signpost patients to the available treatment?

I seek clarification on the referrals that can be made. Our briefing paper notes that referrals can be made to Guy’s and St Thomas’ NHS Foundation Trust but that health boards would prefer that the treatment be delivered locally. Is that treatment available? Are NHS boards in Scotland making referrals to Guy’s and St Thomas’?

The petitioner’s direct experience was that he got a referral. He was positive about his experience but, given the amount of time and effort that it took to go down to the clinic, he found it exhausting. He argues that a specialist clinic should be available in Scotland so that whomever a person with the condition deals with understands how the condition reveals itself and how to live with it.

I suppose the question that I am interested in asking health professionals is whether it would be possible to run such a highly specialised clinic in Scotland. Are there enough people with the condition? If someone has a condition that few people have, does that mean that they do not get the level of support that they require because there are not enough people with it? That in itself would be pretty horrific. As I said, the petitioner certainly spoke positively about his experience in London, but he felt that he was probably not going to continue that.

He said that, when people attend the clinic, they get a card with details of a dedicated contact point for support in the event of emergency flare-ups. Someone is on hand all the time for people who call the number. However, we do not have that service up here. That is what he wants.

Rona Mackay and I found our discussion with Mr Jamieson compelling and challenging.

Yes.

There are clearly things that we will want at least to ask questions about. We should certainly write to the Scottish Government. Do members have other suggestions?

We could write to the British Association of Dermatologists and the Hidradenitis Suppurativa Trust to seek their views.

Who should we put the question about the SIGN guidelines to? We could start with the Scottish Government and establish whether the responsible body is Healthcare Improvement Scotland. Forgive my ignorance, but I do not know who instigates guidelines or what prompts them.

HIS is our equivalent body up here. It acts as a conduit and it would probably be able to take the matter to SIGN.

That is useful. Once we have that evidence, we can reflect further on what we want to do and Mr Jamieson will be able to give us further comments if he wants to do so.

I thank Mr Jamieson for bringing the petition to the committee and we look forward to getting more information from those who we will be writing to.

Can we get information on what the health boards currently offer other than general dermatology services? Is there anywhere in Scotland that offers a service or specialist treatment for the condition?

Shall we start by writing to the Scottish Government and put that question to it? It will perhaps get the information from the health boards, and we will see what comes from that.

Members indicated agreement.

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Permitted Development Rights (Conservation Areas) (PE1688)

The next petition is PE1688, by Alastair Ewen, on behalf of Westerton garden suburb residents association, on permitted development rights in conservation areas. The petition calls on the Scottish Government to review the legislation on permitted development rights, which the petitioners consider impacts unfairly on residents of conservation areas and listed buildings in Scotland. The background information on the petition says that residents face dilemmas because of the technical requirement to submit a planning application for minor work on properties.

The note by the clerk and SPICe provides some background on the current requirements and refers to the Scottish Government’s consultation on raising planning fees. It notes that section 21 of the Planning (Scotland) Bill allows ministers to make regulations allowing planning authorities to reduce or waive fees in certain circumstances. The Local Government and Communities Committee published its stage 1 report on the bill last week, and the Scottish Government’s response is expected before the summer recess. Do members have any comments?

Mr Ewen is a constituent of mine and the suburb is in my constituency. He has flagged up that he feels that the SPICe briefing does not quite address the issues that the residents face. He cites the example that, if he wants to change the gravel on his drive or put up a small gate, he has to apply for planning permission. For tiny things like that, residents have to pay several hundred pounds in planning fees.

Is it the case that, in other communities such changes are deemed to be permitted development, but that in a conservation area they are not?

Yes. I did not know that until the petition was lodged. The issue could be addressed in the Planning (Scotland) Bill. I think we should write to the Scottish Government and see what response it provides on that point.

Does the petitioner have a view on how to protect conservation areas against people who might abuse the rules on permitted development?

I do not believe so. The area concerned is quite distinctive and I cannot imagine anyone abusing it, to be honest. I think that the petitioner just objects to people having to pay extra for minor things that they want to do to their houses.

I presume that he also objects to the time that is taken to go through the process.

Yes.

Rona Mackay has suggested that we write to the Scottish Government for its views on the petition. I wonder whether the Convention of Scottish Local Authorities will have a view on the matter. I presume that the situation adds a bit more pressure on planning departments that are already under pressure.

I have some sympathy with the petition, but I can see the arguments from both sides. I wonder where we should draw the line.

Yes. It is about preserving the look of the area.

There is certainly an argument for waiving or reducing fees for minor work in conservation areas. The Government and local authorities should look at that.

Perhaps we should also put the question to the planning authorities. That would capture those areas that are not managed by local authorities.

I note that listed buildings are included in the rules, as well as conservation areas. There is a balance to be struck. We need to preserve listed buildings and respect conservation areas, but there is also a need to maintain properties. The residents are obviously keen to maintain their properties on a regular basis and they clearly have pride in doing so, but the rules are holding them back. It is about the balance between respecting conservation areas and listed buildings and allowing people to maintain properties on a regular basis.

The tension seems to be around gaining permission and the cost of that. Something could be done on that. We have to look after listed buildings, but surely we can do something on the cost of minor alterations to properties.

That makes perfect sense, but planning departments have been reduced. The argument has always been that they should be self-financing. However, the situation seems to be onerous for individuals in communities who happen to live in a conservation area. It would be interesting to know how that could be addressed.

Do members agree to the suggestions for action on the petition?

Members indicated agreement.

Our paper states that section 21 of the Planning (Scotland) Bill, which has just passed stage 1, allows ministers to make regulations allowing planning authorities to reduce or waive fees in certain circumstances. The matter has been considered in the bill.

It may fall to local authorities to make the decision.

The petition has raised some interesting issues.