Public Petitions Committee 25 May 2017
The agenda for the day:
Continued Petition, New Petitions, Continued Petitions.
Pernicious Anaemia and Vitamin B12 Deficiency (Understanding and Treatment) (PE1408)
I welcome everyone to the 11th meeting in 2017 of the Public Petitions Committee. I remind members and others in the room to switch phones and other devices to silent.
I understand that a minute’s silence will be observed in the Parliament at 11 o’clock today as a mark of respect for those who have been affected by the events in Manchester on Monday night. If we are still considering petitions at that time, I intend to suspend the meeting for a brief period before 11 o’clock so that we are able to show our respect for all those affected, particularly those who died or were injured and their families and friends.
Agenda item 1 is consideration of petition PE1408, by Andrea MacArthur, on the updating of pernicious anaemia and vitamin B12 deficiency understanding and treatment. We are joined by the Minister for Public Health and Sport, Aileen Campbell MSP, who is accompanied by Elizabeth Sadler, deputy director of planning and quality, Scottish Government, and Dr Padmini Mishra, senior medical officer in the office of the chief medical officer for Scotland. Thank you for joining us.
I understand that the minister would like to make an opening statement. I shall allow time for that before we move to members’ questions.
Good morning, convener, and thank you. Pernicious anaemia can have a significant impact on the lives of those with the condition. People can be unwell for some time, having experienced difficulties in obtaining diagnosis and appropriate treatment. That is why I commend Mrs MacArthur for her determination and work to support all those who are living with the condition in Scotland.
I recognise that the committee might ask questions of a more clinical nature. That is why I am accompanied by Dr Padmini Mishra, one of the senior medical advisers in the CMO’s office, and Liz Sadler, who is the deputy director of planning and quality.
The petition was lodged in 2011, and I understand that at that time Mrs MacArthur hoped that the guidelines that were then available for general practitioners would be overhauled and updated. That was achieved by the publication in 2014 of the British Committee for Standards in Haematology guidelines.
The petition made several requests, and I will outline how they have been met. First, on the request for greater awareness of common sets of symptoms experienced by people suffering from a deficiency in vitamin B12, the GP training curriculum includes investigation related to all types of anaemia, including pernicious anaemia, and GPs are expected to be able to address the signs and symptoms of a patient presenting with pernicious anaemia. The British Society for Haematology guidelines further support healthcare professionals in the assessment and diagnosis of pernicious anaemia.
The second request was for an overhaul of the diagnostic tests that are used and to adopt the active B12 test, and for homocysteine and methylmalonic acid tests to be used regularly. I understand that there is no definitive test for diagnosing vitamin B12 deficiency, which is an area for experts in haematology that is addressed in the guidelines. The committee will understand that it is not appropriate for Scottish ministers or their policy officials to intervene in or contradict the evidence-based guidance that is produced by specialists in the field.
The next request was for patients displaying advanced symptoms to be automatically offered trial injections of vitamin B12. Again, the BSH guidelines state that that could be considered. The petitioner also asked that folate and ferritin be checked for, along with other coexisting conditions. The BSH guidelines also provide advice on folate deficiency, coexisting conditions and the provision of folic acid.
Lastly, the petitioner asked for patients to be able to self-inject vitamin B12 as and when they need it. All matters of treatment are for discussion and agreement between the individual and clinician concerned, and that is not and cannot be a matter for Scottish ministers to become involved in. However, I have been advised that self-administration can be challenging as it requires an intramuscular injection that has risks associated with it. As a result, some patients might not wish to self-inject, so that would have to be a matter for discussion between the individual and a clinician.
The BSH guidelines address the majority of the issues that were raised in the petition. However, at the time of their publication, Scottish Government advisers felt that the guidelines were not in a suitable format for use in GP practices—that is, they were not in a format that GPs were familiar with, such as the Scottish intercollegiate guidelines network or National Institute for Health and Care Excellence guidelines. As a result, the Scottish Haematology Society was asked to prepare a draft summary document of the guidelines. An initial draft was prepared but the SHS advised the committee that, because of the level of work required to complete the document, it had taken the decision to withdraw from the process, leaving the document in draft.
Committee members will be well aware that it is not the Scottish Government’s role to publish clinical guidelines or summary documents derived from them. However, I make clear that the content of the BSH’s guidelines was considered relevant and appropriate for adoption by Scottish clinicians, and that view is extant.
In 2015, the National Institute for Health and Care Excellence produced a clinical knowledge summary “Anaemia—B12 and folate deficiency”. Clinical knowledge summaries are designed to be concise, accessible summaries of current evidence for primary care professionals and are in a format that GPs are familiar with.
Our position is that the petitioner’s requests have been met. The chief scientist office within the Scottish Government, which has responsibility for the funding of clinical research in Scotland, would welcome applications for research projects aimed at the diagnosis and treatment of people with pernicious anaemia. The petitioner may want to consider that route, aided by the Pernicious Anaemia Society to identify researchers willing to move that forward.
I hope that my statement has addressed the substantive points in the petition and illustrated the progress that has been made. I am happy to take questions from the committee.
Thank you very much. As you said, the petition has been under consideration since 2011, as the committee had been waiting for the development of suitable clinical guidance. First, we were waiting for the publication of the British Society for Haematology’s guidelines, which were published in 2014. More recently, we have been waiting for the Scottish Government to publish a summary of the guidelines, which the Scottish Haematology Society was asked to produce.
Why was the summary document commissioned, what did it cost and what outcomes did it hope to achieve?
As I outlined, the considered opinion at the time was that the guidance from the BSH was in a format that GPs might not have been used to. There was no question about the content or the guidelines themselves; rather, the issue was about the format. Therefore, the SHS was asked to produce a summary but that has not happened. The summary has not been completed; it remains in draft format. However, since then, NICE has produced a clinical knowledge summary, which is in a format that GPs are used to.
GPs have a plethora of information to access on the condition.
You said that the format was not considered to be appropriate “at the time”. Does that mean that you now think that the BSH’s guidelines are appropriate?
You said that the question was about the format. However, the advice on the BSH’s guidelines was about more than the format—indeed, the Government view was that the BSH’s guidance was not suitable for the Scottish practice setting and it raised concerns that the second-line testing that was recommended by the BSH guidelines was not standard in Scottish laboratories. Do you agree that it was not just the format that was the issue, or has that opinion changed?
The issue was about the format. There was never any question about the content.
With respect, minister, the committee’s briefing says that the Scottish Government
“raised concerns that the second-line testing recommended by the BSH guidelines is not standard in Scottish laboratories and the format”
was an issue. There are two separate matters.
The other point to remember is that NICE has published guidelines, which are taken from the BSH’s guidelines. Those are complementary; they do not contradict one another. The issue was the way in which information was presented; there was never any question about its content or the guidance.
That is not the evidence that we were given before. I am asking whether you have changed your opinion.
I ask Dr Mishra to comment.
Dr Padmini Mishra (Office of the Chief Medical Officer for Scotland)
The opinion has been the same. The British Society for Haematology’s guidelines took two years to develop. Scottish clinicians, including GPs, never questioned those guidelines. The issue was that they were not used to reading the society’s guidelines. They are much more used to reading the frequent guidelines that they get from the General Medical Council, SIGN and NICE, and so on.
There has not been a change of opinion on what is recommended in the guidelines. It remains the case that no definitive test is available for pernicious anaemia. First and foremost, a person’s clinical condition must be taken into account. If required, empirical treatment should be tried, even if the tests are negative—because the tests could be negative and that is the issue.
That still does not explain why, at the time, the guidance was deemed to be not suitable. If it was just a question of the format, I presume that that would have been a relatively straightforward thing to sort out. If it did not really matter that much, you would not have asked the Scottish Haematology Society to do more work for you, and if it mattered, I would have thought that you would have found somebody else to do the work that the society was unable to do.
Maybe my colleagues will ask—
It is important to recognise that, in 2015, NICE produced a clinical knowledge summary in a format that GPs could use, which does not contradict anything in the original BSH guidelines. There is that concise summary for GPs to use, and there is also the much more in-depth format that is produced—
With respect, I am saying that there is that format for GPs to use, which has been produced since the petition was lodged.
We would maybe need to test some of that, because there seems to be a contradiction. You seem to be saying that there was a problem and now there is not a problem, but that, anyway, even if there was a problem, it is okay because NICE has produced information. Anyway, I call Angus MacDonald.
Good morning, minister. You touched on this in your opening remarks, but the submission from the Scottish Government dated 12 October 2016 explained that it has
“no plans to publish any draft/incomplete adaptation undertaken by SHS.”
Can you clarify the extent to which the SHS’s work is incomplete? You have told us why the Scottish Government decided not to publish it, but what aspect of it was incomplete?
There has to be a set of processes that are gone through. Ms Lamont said that the process would be straightforward, but it requires a lot of discipline to make a concise document out of something that is in depth. A lot of work and effort is required to make sure that nothing is missed or omitted and that nothing is included that overstates a particular way in which a system should be approached.
Also, there has also been no consultation on the document and there has not been the required level of peer review and research to look at the guidance, so it would not be appropriate or responsible for the Government—or anybody—to publish the summary document at this point.
I point out again that, since then, NICE has published a knowledge summary in a format that GPs can use, which does not contradict the existing guidance from the BSH but complements it. Therefore, a significant amount of information is to hand and ready to be used by GPs and clinicians across the country.
Have you had any indication from GPs that they are not satisfied with the NICE advice?
I am not aware of any. I am not even aware that GPs have raised any issues with the BSH guidelines. Nothing has been raised with us by clinicians.
With respect, even if GPs have not raised concerns, the Scottish Government itself has said that there are problems with the BSH guidelines. That was the considered view of the Scottish Government in evidence to the committee.
However, it is still helpful to know whether there has been any feedback from GPs, and there does not seem to have been any.
Good morning, minister. The Scottish Government explained in its submission of 26 November 2015 that it would share the draft version of the SHS’s summary document with the Public Petitions Committee
“only once the”
diagnostic steering group
“were satisfied with the draft”.
The committee received a copy of the draft summary document after it was approved by the diagnostic steering group.
Can you clarify whether the group’s view on the summary document has changed? If it has not, can you clarify why, in those circumstances, the Scottish Government will not publish it?
The summary document has not been approved, so it is not going to be published.
Elizabeth Sadler (Scottish Government)
I add that the summary document went to the diagnostic steering group—that was the version that the committee has seen. The committee asked Mrs MacArthur whether she had any comments on the draft, and she had a number of comments, which she made to the SHS. It responded to those comments, and that was the point at which it withdrew from the process, because it felt that it was being asked to change the content of the guidance, rather than just summarising it. The document was never finalised, therefore, and it has not been back to the diagnostic steering group since the version that the committee has seen.09:15
Does that mean that the diagnostic steering group’s view of the summary document has actually changed?
No, because the purpose of the document was to give a summary of the original guidelines; it was not about changing the guidelines. The clinical consensus is that the original guidelines remain valid. As the SHS removed itself from the process before it could finalise the document, the Government is not in a position to publish that document.
I am sorry but, just for my benefit, does that mean that the summary document does not reflect the original document?
It reflects the original document, but it has not been finalised. The SHS did not formally sign it off and therefore did not give the Government a final version that could go to the diagnostic steering group. The SHS withdrew before it did that.
Yes—the SHS summary document has not been approved, but it is not contradictory to the original BSH guidelines that were issued. The SHS was not asked to change the guidelines. The aim of the process was to change the format to ensure that the guidelines were accessible for GPs. To go back to an earlier point, NICE has since produced a clinical knowledge summary, so there is a concise, usable and understandable summary for GPs in a format that they are used to. The request of the SHS was never to change anything in the guidelines, which were set by the BSH.
If nothing in the summary document contradicts the NICE document, I still do not get why we cannot publish it.
It has not been approved.
So it cannot be approved if the SHS is not involved any more. Is that what you are saying?
There is no need for it now. There is the NICE clinical knowledge summary, which presents the information to GPs. As I said in response to Angus MacDonald, no GP has raised any concern over that. The clinical knowledge summary follows on and flows from the original BSH guidance, which at that time was considered to be in a format that GPs were not used to. Since then, NICE has produced a clinical knowledge summary, and there is plenty of information for GPs to use. Furthermore, much more authority is attached to the NICE guidelines. Despite the considerable work and effort that the SHS has put in, the summary is no longer deemed to be as necessary as it was when the BSH published its guidelines.
At the risk of repeating ourselves, I want to clarify that, regardless of what has happened over the publication or non-publication of documents, you and the GPs are satisfied that there is enough information in the NICE document and the BSH document to provide comprehensive guidelines and there is no ambiguity about any of it.
There is nothing contradictory in the NICE clinical knowledge summary and the BSH guidelines. The clinical knowledge summary is in a format that GPs are used to and, as far as I am aware, no GP has contacted us to raise questions about the guidelines or request additional information.
What has been the demand for second-line testing in Scotland since the BSH’s guidelines were introduced and how is it being met?
We have no evidence on how much the demand has increased or decreased as a result of the guidelines. However, the guidelines suggest that the diagnosis is not clear cut. If required, clinicians can access the second-line test. It is not universally available in Scottish laboratories, but it is available to them from elsewhere.
Why is it not universally available in Scotland?
The tests themselves are not dependable. What can be surmised from a result, whether positive or negative, might not help with the management of a case. It is difficult to interpret the tests. Therefore, more research is required so that we have standardisation of the tests and cut-off points, so that people know what is a low level and what is a sub-clinical level. Those are not available yet, so it is difficult for clinicians. At present, that is in the realm not of GPs, but of specialists and researchers.
What is the Government doing about that?
As I said in my opening remarks, the chief scientist office is willing and able to take on research proposals from researchers, so there is an opportunity to progress that if a suitable submission is made to the CSO.
Are you actively seeking submissions on the carrying out of such work as opposed to saying, “If someone has a research proposal, we would consider it”, albeit that that is helpful?
Submissions can be made by patients, the public or clinicians; it is not up to the Government to ask the CSO to look at research proposals. We have asked the CSO to look positively at any proposal that is made in this area. That is all that we can do—encourage the CSO to keep an open mind and make it aware that this is an area of need. We cannot set up the proposals; a researcher must approach the CSO.
I understand that, but Governments often create projects and actively say, “We want a researcher to do this job.” Clearly, Government ministers do not have the technical or the clinical expertise to do that, but they can identify that there is a need and actively create an option and ask people to bid for that work.
The national network management service has pursued the establishment of a short-life working group on haematology, which will be able to pursue some of the issues that the petition has raised, as well as the issues of research.
There is the short-life working group on haematology, and there is the keenness of the CSO to receive any submission on further research.
Could it not be the other way round? Could you not say that there is a job to be done, on which you would like bids to be made? I appreciate that there might be technicalities that I am not aware of, and I know that people make research bids all the time, but given that you recognise that there is a need for such work to be done, can you not create a project that invites bids to do the work?
Work is being taken forward by the short-life working group, which can consider all those elements. In addition, the chief scientist office can accept bids from researchers to progress other areas of research. There are two very clear routes forward to further enhance the research, knowledge and capacity on the issue.
I have a question for Dr Mishra. You said that, at the moment, it comes down to clinicians’ judgment, because there is no standardised diagnostic testing. Is any pattern emerging on that? Do you have any data that shows the most likely outcome of those decisions?
There is no readily available data. The British Society for Haematology acknowledged that there are no randomised controlled trials in this area. It recommended a pragmatic approach.
Because every patient starts from a different level, it is very difficult to compare the journeys that people make from the beginning of the process to the end. It also depends on patient preference—some patients would like a lot of testing to be done, some would just like to get the treatment, and some would like to wait and see. Therefore, it is extremely difficult to find any data on the issue.
I find that slightly staggering. If there is a need for second-line testing, the Government should take the lead and fire the gun to start the research.
We have the short-life working group, which has been established.
The group has not come to a conclusion yet about what it is doing.
It is in the process of being established.
Is looking at the gap around second-line testing part of the group’s remit?
The group intends to look at the management of vitamin B12 deficiency in the totality. Once the group is set up, it will decide its remit. If looking at the gaps requires more guidance and research work, that will be the group’s aim. The group is keen to do some work in this area, but not exclusively on testing; its remit is the general management of vitamin B12 deficiency.
The Government has set up the short-life working group, and the membership—
No; the national services division has set up the group.
What is the national services division?
The national services division is part of NHS National Services Scotland—NSS. It runs managed networks across a range of disorders. Its managed diagnostic network has set up the short-life working group on haematology, which is looking at B12 deficiency.
It would be useful to have a note on the membership of the group and its remit. I assume that the Government will have input into the remit and will say that it actively encourages research on this issue to be part of the remit.
We can get you that information and we will ensure that the network and the short-life working group understand the committee’s particular interest.
If the short-life working group is being established partly in recognition of the work that is being done, will its remit include—
Forgive me; I am trying to be helpful. We can let you know the membership and ensure that the group knows the committee’s interest.
What about the timescale? I am genuinely interested in the extent to which the Government has recognised the gap in the research and whether it will actively ensure that the research takes place. That could be included in the information that you provide to the committee about the working group.
The committee asked the Scottish Government to consult the petitioner on the development of the draft summary document from the outset. In that regard, when the SHS withdrew from the process, it commented:
“the very considered responses we have received from the petitioner in response to the draft guidelines indicate the limitation our small society has in trying to produce specific Scottish guidelines”.
The committee understands from the petitioner’s submissions that she is particularly concerned about gastric parietal cell antibody testing—I apologise for my pronunciation—and she does not agree with the way that the issue is addressed in the BSH’s guidelines. The SHS does not appear to have the capacity to address those concerns, and the petitioner considers that she has not been listened to for that reason. Will you commit your officials to meet the petitioner to discuss her concerns about the testing procedures for pernicious anaemia and vitamin B12 deficiency?
If the petitioner wishes to meet officials, we will happily arrange that to make sure that we understand fully any outstanding concerns, following our responses to each point in her petition. It is important to recognise that my officials are not in a position to change clinical guidelines or clinical guidance on the knowledge summaries, because of the robust processes to create that evidence base and to bring to bear peer research. They can look at avenues to ensure that the short-life working group understands her continued concerns, but there are parameters around and restrictions on changing such guidelines.
The Scottish Government took a view that the BSH guidelines were inadequate and asked the Scottish Haematology Society to produce a summary. I do not think that anyone suggests that Government ministers have to sit down and write clinical guidance, but there must be capacity within the system to meet requests by the Scottish Government for things to be done. Nobody is pretending that you, as a Government minister, are capable of making clinical decisions—none of us can do that—but the Government is capable of saying, “We think there’s a gap here. Can you look at it?” That is where a lot of this has emerged from. Can I ask—09:30
Sorry, but I want to respond to that because it is important to be clear about the position. Although we are absolutely happy to engage with the petitioner and we recognise the huge amount of work that she has put into the petition, it is important to put on the record that such engagement will not result in a change to the existing clinical guidelines. I reiterate that there was never any doubt as to the veracity or accuracy of what the guidelines said; the issue was the format.
With respect, we have already heard that it was about more than that and that it was also about the fact that second-line testing is not available in Scotland, and the Scottish Government itself—
That was never a part of it—
—recognised the need to do more than simply format the guidelines. However, I recognise what you said about the NICE advice—
With respect, I think that you are downplaying the summary, which is important work.
I am sorry, but can I finish the point? We recognise the work that has been done, but the question is how proactive the Government has been in recognising that the work that it asked to be done was not completed and how that work is to be completed.
Will the short-life working group have patient representation? Would it be possible for that group to meet the petitioner?
As I said, we will explore with officials where we can ensure that the petitioner’s views and voice can be heard; we will also explore whether a meeting would be appropriate for the short-life working group. I reiterate that we will get back to the committee on the membership of the group.
Okay. Obviously, the petitioner will have heard this evidence and will respond to it. We will ensure that her comments to us are conveyed to you.
I thank you very much for your evidence. We recognise that the petition has been on-going for some time and that it is about clinical technicalities that probably not one person in here, with the honourable exception of Dr Mishra, understands. However, everyone recognises the petitioner’s role in pursuing the issue.
I do not know what suggestions the committee has for taking the petition forward. I certainly think that it would be useful for us to reflect on all the information that we have had on the petition, including the information about the short-life working group and the NICE guidance. We can maybe reflect on that and what the minister has said in this evidence session, give the petitioner an opportunity to respond and then come to a view. Do members have any other comments or suggestions?
I thank the minister for her evidence this morning, which has certainly helped to clarify the situation in my mind. There are a couple of salient points in the evidence that has been given this morning, one of which is the fact that the NICE clinical knowledge summary has superseded any work by the SHS. Another salient point is the fact that there has been no negative feedback from GPs on how the matter has been dealt with up to now. I am happy to reflect on the other evidence that has been given, but I think that those two salient points have to be stressed.
Okay. That is helpful.
The niggling problem that I have is the fact that the Government initiated the work that was done by the SHS, which produced draft guidelines. There must be a way of bringing out collaborative guidelines. If the SHS guidelines do not contradict anything in the NICE guidelines, I do not see why they cannot be published as well. It seems to me that the more guidance that we have on the issue, the better.
The issue for the Scottish Haematology Society is that it felt that it did not have the capacity, as a small organisation, to do what you suggest. The question really is whether any work remains to be done, given the new guidance—that is, the work that was done was useful, but does it need to be pursued further? Obviously, we hope that the short-life working group might consider that.
I think that all those avenues have been covered. The minister has clarified that she and the GPs are happy with the SHS guidelines, which have now been superseded. I am content with that and do not think that there is any need for alarm in that respect.
Okay. I suggest that we reflect on the evidence, give the petitioner an opportunity to respond and record our thanks to the minister for her evidence and for the update on the information around the NICE guidance. We also look forward to hearing more about the short-life working group.
I thank the minister and those with her for their attendance. I suspend the meeting briefly.09:35 Meeting suspended.
09:38 On resuming—
Drinking Water Supplies (PE1646)
Agenda item 2 is consideration of new petitions. We have two new petitions to consider, the first of which is PE1646, by Caroline Hayes, on drinking water supplies in Scotland. We will hear evidence from the petitioner, who is accompanied by Lesley Dudgeon, the secretary of Kincraig and vicinity community council. I welcome them to the meeting, and I welcome Kate Forbes MSP, who will also speak to the petition.
The petitioner can make a brief opening statement of up to five minutes, after which we will move to questions from the committee.
Thanks very much for seeing us. Water is our most precious and important natural resource. It is vital to life, and Scotland has it in abundance. It is important for health, tourism, wildlife and a sustainable economy, and the Scottish Government has a responsibility to maintain and improve the quality of all fresh water in Scotland. The drinking water quality regulator for Scotland exists to ensure that the water is safe and pleasant to drink and that it has the trust of customers. It also ensures that issues that may affect drinking water quality in Scotland are adequately understood and that any knowledge gaps are filled through research.
In Badenoch and Strathspey, since the change in 2012 from Loch Einich to the aquifers in Kinakyle, there has been a problem with the water supply that the DWQR has still not acknowledged. This could be the tip of the iceberg for the whole of Scotland. The DWQR has been aware of the issues with taste, odour and skin irritation since 2012 but no monitoring of Scottish Water was done until the full audit in 2016, which concluded that everything was normal. We were told that there would be on-going discussions with the national health service, the DWQR and Scottish Water, but none took place.
When the problem was classified as a major event, the DWQR resolved to closely monitor water quality during chloramination, but that has produced no results. Given the dissatisfaction of locals, Drew Hendry MP and Scottish Water commissioned an independent survey that produced appalling results for Scottish Water, resulting in its having to admit that the taste and odour were substandard. The health issues that were identified in the survey have been admitted and, after an open meeting with local people, they have had to be addressed—but it has taken five years.
After that meeting with Dr Ken Oates, Moira Watson and the DWQR, Peter Farrer’s reassurances are hollow. It has been reiterated that
“the water is of a high quality and over the past five years has consistently met the strict standards”.
However, we know that that is not the case, because Peter Farrer told us in January:
“We would like to apologise that the taste of the water does not come up to the standard expected and also that it has taken us longer to make improvements than it should have”.
The same Peter Farrer says that Scottish Water’s mantra is to
“put our customers at the heart of our business.”
The standards are not picking up the problems. Local doctors made their concerns known to the health board in 2012 and again in 2015. Why is the DWQR not investigating or enforcing the standards? Where are the long-term studies of the effects of chloramination? There are none.
Scottish Water sent us a postcard—I have it here. It has apologised for the taste and odour issues and, in order to resolve them, it is adding ammonia to the chlorine. Chloramine is a water disinfectant that is 200 times less effective than chlorine at killing E coli, rotavirus and so on, and it is far more difficult to remove, but it is cheap. What detriment to human health is caused by the disinfection by-products? Scottish Water may simply be trading regulated DBPs for unregulated ones such as—I have written them down, but they are difficult to pronounce—N-nitrosodimethylamine, iodinated DBPs and hydrazine. There are no risk assessments for the unregulated ones.
There is also evidence of disinfection by-product exposure via inhalation during showering, but there have been no follow-up studies to confirm the risks. A Cranfield University study concludes that, in the UK, only one group of DBPs is regulated—the trihalomethanes, which have a permitted level of 100µg at the taps. Further investigations are needed, as there is limited sampling, and we need more information on the occurrence of NDMA where there are health concerns. For a number of chemicals, the toxicity database is grossly inadequate or absent.
The Department for Environment, Food and Rural Affairs is concerned over the lack of data on iodinated DBPs, which makes sound assessments of the risks that they pose in drinking water impossible. In the US, the Environmental Protection Agency does not hold enough information on chloramines and their effects on weakened immune systems in infants, the elderly, those undergoing chemotherapy and those with HIV, nor does it hold information on their incompatibility for dialysis patients.
Risk assessments that are based on incomplete data are not sound. Despite the interaction of all the chemicals that are used in the industry, there are no cumulative risk assessments. Therefore, the system is not robust enough.
The DWQR’s job is to monitor the risks. There are efficient and sustainable alternative options for water treatment that are based on ion exchange, ultra-violet light, ceramic membranes and advanced oxidation, which offer lower lifecycle costs, greater efficiency and much lower environmental impacts. Publicly owned companies have a responsibility to use those. Although evidence about whether many chemicals pose any significant threat to public health may be lacking, removing them as an additional benefit of treatment for other purposes is advantageous.09:45
Thank you. The first part of your petition calls for the role of the DWQR to be reviewed, and the briefing that has been prepared for us sets out in detail the DWQR’s role as described on its website. Do you have any comments on the description of its role measured against your experience? Is there a gap between what it reports itself to be responsible for and your experience of what it has done in your case?
Yes. It is not monitoring, sampling and assessing the information or following up on it. Its job is to look at what happens in Scottish Water and monitor it, and it is not doing that.
Okay. Thank you.
Good morning. You perhaps covered this in your opening remarks and your answer to the convener’s question. The DWQR’s description of its role is that it exists to ensure three things: that drinking water is safe, that it is pleasant to drink and that it has the trust of consumers.
It is not doing any of those things.
That is what I was going to ask you.
What is it there for? It is like a chocolate fireguard. I am sorry—I maybe should not have said that.
That is very succinct. You mentioned in your opening remarks that there has been no cumulative risk assessment.
No. The water industry puts lots of different chemicals in the water. It uses phosphates to line the lead pipes, and there are lots of places that I know around Aviemore that have lead pipes. The plumbers say that, when they cut into them, they see the stuff lining the pipes. Scottish Water adds phosphate to line the pipes, it adds ammonia, it adds chlorine—all of those chemicals come together in our water, but Scottish Water is not carrying out cumulative risk assessments.
Good morning. I have a supplementary question on the implementation of any recommendation. Who has that responsibility?
Yes. If there are recommendations, once the testing has been done, because of issues with the water, who is responsible for implementing those recommendations? Do you know who has the responsibility for ensuring that any recommendations are enforced?
It is the DWQR, which is overseen by the Scottish Government. The Scottish Government is at the top, with Scottish Water, the DWQR and the Scottish Environment Protection Agency under it. Those agencies should all work together, but they do not seem to be working together.
Sorry—perhaps I am not answering your questions.
I am not asking particularly good questions.
My understanding is that SEPA does not have responsibility for private water and only has responsibility for public water.
I am trying to understand, if there is an issue with the water, the DWQR does the monitoring—
It is supposed to regulate the whole industry.
Is the DWQR supposed to have the power to ensure that recommendations are implemented? Is that where responsibility sits?
Lesley Dudgeon (Kincraig and Vicinity Community Council)
I think that it regulates itself.
Yes. No one regulates the DWQR. The Scottish Government should be regulating the body. That is what we are asking you guys to look at.
That was a convoluted way to get to the answer that I was looking for.
Sorry, but I was not really sure what you were asking.
Somebody has to take responsibility. For five years, we have tried to resolve the situation. We have had meetings, but Scottish Water does not listen.
It sends out standard replies.
It sends them to doctors.
The replies say that everything is fine and that the water quality falls within the regulations.
They say that everything is within the normal parameters.
They say that everything is being run just lovely. That is all that Scottish Water says.
But the problem keeps on coming back. In 2012, when the water was changed over, the doctor in Aviemore went to the public health authorities. They got in touch with Scottish Water, which sent back a stock reply. In 2015, the same thing happened again. Scottish Water keeps on telling us that there are no problems with the water.
In the background to your petition you say that, despite carrying out a full audit, the DWQR found no issues with the treatment works in your area.
Will you explain how the full audit came about? Was that a regular audit as part of its Scotland-wide audit programme, or was it initiated at your request?
No, the audit happened because there had been complaints. There was a major—
The DWQR has said that it has done a full audit and that it found no issues. However, as I have mentioned, Scottish Water was sending out postcards to everyone saying that, if people were unhappy with their water—because there is obviously a problem here—the good news was that the water was changing. There are two agencies that are not working together.
The DWQR’s audit says:
“Between March and June of 2016, 36 complaints were received by Scottish Water regarding water quality”.
The summary of those complaints included unpleasant taste and skin irritation. However, the DWQR is not monitoring the situation. It has not done any monitoring, even though that is its job.
With regard to the boreholes, Scottish Water says that it has a state-of-the-art treatment plant. It keeps fobbing us off and telling us that it all works, but it does not. Scottish Water had to clean out the distribution pipes. It did that at night, but I happened to see the guy when he came to do that. There was this black stuff that came out of the pipes. Where is that coming from? There is a picture of that. We have loads of pictures.
Any information that you have brought along will be circulated to the committee afterwards.
Good morning. Our briefing pack tells us that chloramination, which is what Scottish Water is doing to the water in your area, is widely used throughout the United Kingdom and that it plans to expand its use throughout Scotland. Are you aware of any other problems or experiences similar to yours in the UK?
We know that there have been problems in Fort William, and Scottish Water uses chloramination there.
I am trying to ascertain whether there are issues beyond Scottish Water because, obviously, if those are happening throughout the UK, it will not be a Scottish Water issue because it does not operate south of the border.
Wales does not have these problems because chloramines are not put in the water there.
I am trying to find out whether the issue is particularly localised.
No. Chloramines are put in the water in other places, too.
I think that chloramination is done in 14 places in the UK. A lot of those places do not know that that process is used.
Has chloramination improved your water?
It tastes metallic.
We would have brought some today and you could all have had a taste, but we were not allowed to bring liquids into the Parliament building.
Scottish Water says that chloramines do not have a “significant taste or odour”, unlike chlorine, which can have a stronger effect. That is not your experience.
That is not the case.
No, it is not. Our water tastes metallic now. We are not sure, but it could be the water source that is the issue.
I have sensitive information. The press has been hounding us. I do not want the press to get hold of this, but I would really like you guys to see it, because it is incredibly important.
As I have said, we will make sure that the committee has sight of all the materials that you provide to us.
Good morning, ladies. Our briefing refers to the DWQR’s 2015 annual report. The report provides statistics on compliance and what it refers to as
“contacts … from consumers who are dissatisfied with the quality of their supply”.
It says that there was 99.92 per cent compliance with the standards that are set out in legislation and the European Union drinking water directive and that only 0.2 per cent of consumers reported
“concerns with the quality of their supply”.
What are your thoughts on those figures?
Scottish Water has published its results from 2012 to 2015. There are a whole load of measurements. If you look through the results, from top to bottom, they do not change. That does not happen when you monitor something. There were a lot of gaps and only twice in the whole of that time was the smell of chlorine noticed. If Scottish Water does not put in its notes that there is a smell of chlorine, of course it will fulfil the parameters. It is not putting down information to be assessed.
What was the first part of your question? You mentioned something else.
I asked for your thoughts on the figures and the low percentage of consumers who had reported concerns—the official figure in the DWQR’s report was 0.2 per cent. Have you challenged it on that?
No, I have not challenged the DWQR. However, we know from our experience that people do not complain, because they are not listened to. They are fed up with not being listened to.
Scottish Water has had numerous and regular meetings throughout the strath and all the different villages. It has attended the Association of Scottish Community Councils and met community councils in the national park. If there were no complaints, why would Scottish Water be running all those meetings? It is running all the meetings to try to alleviate the problems that we are having in our communities.
When Lesley went to one meeting, she was arguing with her husband as they were coming up the stairs, because they thought that they were going to be late. The room was full of people, but someone said to her, “It’s okay, you are the first people here.”
We were looking in the window and I could see loads of people in the room. I wondered how we could be the first people here, given that I could see people in front of me. It turned out afterwards that they were all Scottish Water employees.
They had been bused in.
Like me, people were arriving thinking that the community had turned up to the meeting but, when we got to the room, we were thinking, “Wait a minute,” because there were people there who were not from our community.
When Scottish Water held the meeting, it separated everybody. It asked everyone to write down their questions.
People were not allowed to ask a question.
We were not allowed to sit in a room and listen to everyone else’s opinion. Scottish Water got people to write on a piece of paper what their concerns were. It then answered those points individually.10:00
We said that we did not know what people from other villages were asking and what other concerns people had, and we were told that the Scottish Water people would sum it all up for us at the end. That is not a public meeting. A public meeting is when the public can go and speak out, speak to other people and find out about things. That is why the water action group was set up in Badenoch and Strathspey in 2016. We wanted to bring together all the information from the villages across the strath and start monitoring and writing down all the health complaints. We go to the doctors and pharmacists. We have now managed to pull all that information together, which means that Scottish Water cannot turn round and say that it has no complaints and does not know about the issues, because we know that it does know about them. However, after five years, it does not want to address those issues.
We did a survey to find out whether we should come to the committee, and we can give you all of that information.
That would be helpful.
I want to follow up on the meetings that were held. According to our briefing, Scottish Water’s web page says that five information events were held in May and June 2016, with a follow-up information event and public meeting in March 2017. From your comments, it is fair to say that you were less than impressed with that.
Scottish Water got a very difficult time in 2016, because our residents have had enough. We are buying bottled water and having to get springs reopened. We are paying for a product that none of us can use. After five years, people are at the end of their tether. Drinking water is the most vital of basics and, if we cannot get it, we have to look at alternatives for getting it.
Did you both attend all those meetings?
I did not attend all of them.
I attended most of them.
I note that Scottish Water plans to hold a further event for residents in Badenoch and Strathspey in November. Do you intend to go along to that?
Your petition calls for independent research into the safe chloramination of drinking water. Our briefing identifies a variety of sources of evidence regarding the health effects of chloramine in drinking water. What is your response to the fact that those sources—the World Health Organization, the United States Environmental Protection Agency, Centers for Disease Control and Prevention and the International Agency for Research on Cancer—have referred to “limited evidence”, a “lack of published evidence” and “inadequate evidence”?
You have just said it—there is a lack of evidence. According to a European Union directive, nothing that is potentially damaging to health can be put in the water. We have photographs and we have heard about skin complaints. We have loads of information that water is affecting people’s health.
As everybody knows from listening to the news, the NHS is fairly stressed. If this is another tip of the iceberg, and all these people are attending hospitals and so on, surely the issue should be taken into account.
You talked about information. The Cranfield University study that I spoke about, which was commissioned by the Scottish Government, said that there is not enough information.
I thank the witnesses for that information. Obviously, over the past few months, I have been made aware of people’s concerns to do with taste and odour and skin issues. Will you sketch out for the committee the impact on people that you are aware of? For example, you mentioned buying bottled water.
The use of bottled water has increased in our area because people cannot drink the tap water. In Aviemore, we have a large tourism industry and a lot of people come for holidays. In restaurants and hotels, when people ask for tap water, staff have to say, “Well, we can give you it, but you can’t really drink it.” That is having an effect on our tourism industry. Even though it is a lovely area, a lot of people who work in the industry in Aviemore are not on high wages. For families who are on lower incomes, a lot of their wages are now going on buying bottled water.
It is difficult, because we had—I would say—the best water supply when it came from the top of the mountain, but now we have the worst. There was a taste test on “The One Show”. The programme took samples of our water and Manchester’s water—I think that it took them to Perth, although I am not sure about that—and got people to taste them. Of course, the people were all saying, “This is the Highland water and this is the water from Manchester,” but they were physically spitting it out when they tasted the Highland water. They could not believe what they were drinking.
I spoke to Dr Jachacy, who has just retired from the Aviemore surgery, and he said that, statistically, the kids are getting badly affected. Aviemore has a very transient young population, with lots of people coming in and going out. If a child has eczema and their hands are all bandaged up and bleeding, the whole family are affected, because they cannot sleep.
Since the change to the water supply in 2012, there have been additional changes such as the flushing out and, in April this year, the chloramination. What differences have you noted in people’s concerns over that time?
The Strathspey and Badenoch water action group monitors the whole of the valley, and reading its Facebook page has been a good way of keeping tabs on what is going on. There does not seem to have been any change. On Tuesday, people in Kingussie were saying that even boiling the water does not help, because it does not get rid of the chloramination.
Lots of people in the strath have things to filter the water, but chloramination is very stable. That is why they use it. It stays in the pipes for much longer and it is very difficult to remove. It cannot be removed with a table-top filter. You have to get specialist equipment. Scottish Water did not tell us that when it was introduced.
Rona, do you have a question?
My question has been answered.
As there are no further questions, I thank you very much for your evidence today.
I think that there are a lot of issues that the committee will want to pursue. Do members have views on what we should do with the petition?
There are several fundamental questions. Who is testing the water? What are the test protocols? Who is analysing the results and making recommendations? Who has the power to enforce the recommendations? Is there any conflict of interest there? With those questions in mind, I think that we should ask the DWQR, Scottish Water and SEPA to give evidence, because this is a recurring issue.
This is just the tip of the iceberg.
It is important to give Scottish Water an opportunity to respond. We can consider whether that should be in an evidence-taking session. I think that we should also write to the Scottish Government so that we can understand its role. We know that the Parliament has a role in scrutinising Scottish Water’s work and its reports.
I suggest that we write to the Scottish Government, Scottish Water and the regulator, SEPA. Another suggestion is that we write to the Water Industry Commission for Scotland. I also wonder whether there are groups that we should ask. I am interested in the way in which Scottish Water consulted. The idea that a public meeting is held but everybody is spoken to individually is quite unique, in my experience—well, it is not quite unique; it is unique.
The people from Scottish Water said that that is the new, modern way of having a public meeting.
Perhaps it is to avoid people shouting at them—they deconstruct the meeting.
Brian Whittle mentioned some questions. Are there others that members want to flag up with the organisations?
The Strathspey and Badenoch water action group seems to devote a lot of time to the issue. Perhaps we should invite it to give evidence.
Given the concerns that have been raised about the health impacts, we could write to the health board to ask for its views; I do not know whether it would be in order for us to write to the GPs in Aviemore.
There is an NHS research paper synopsis that highlights the lack of convincing data from long-term studies into the effects on public health of chloraminated water.
It would be good if you could share that paper, or a link to it, with the clerks.
I do not have it.
Okay. We can trace it.
We should certainly write to the health board to ask for its views.
I go back to Rona Mackay’s point. You describe specific issues, but the committee might want to look more generally at the national policy implications as opposed to conducting an inquiry into the petitioner’s water supply. We want to know whether there are issues that are not being addressed. The petition focuses on the role of the regulator. We want to know what measurements are taken and how the regulator responds to consumer concerns.
It would also be interesting to explore the relevant EU directives. I find it hard to believe that a large public body would not be adhering to EU regulations. We need to tease that out. I think that the petitioner said that there are certain things that cannot be put into water under EU regulations. I am pretty sure that Scottish Water will stick to those, but we need to find that out.
Only one of the drinking water disinfectant by-products is measured in Britain—TTHM, the level of which is reduced by using chloramines. I talked about the cumulative effect; all the different levels are not added up. The EU directive says that the total must be under 100µg per litre. Because only one of the substances is regulated, all the various levels cannot be added up. Only one of them is measured.
That would all come out in evidence.
We hear what Caroline Hayes and Lesley Dudgeon have said about their concerns. We want to look at the general context to establish whether there is a structure in place to address such problems wherever they emerge.
My sense is that the committee thinks that it would be worth while obtaining more written evidence and then taking further oral evidence. We can perhaps discuss what such a session would look like once we have received initial responses from all the different groups that members have identified.
I wonder whether it would be in order to inform the Environment, Climate Change and Land Reform Committee of the petition at this early stage by passing on to it the Official Report of today’s meeting, given that it has oversight of Scottish Water, SEPA and the DWQR. We could make it aware of the situation and keep it in the loop about any further evidence that is taken.
At the Conveners Group, I made a presentation on the role of the Public Petitions Committee. One of the discussions that we had was about what is expected when we pass petitions over to other committees; we also discussed the need to ensure that there is an information exchange so that other committees know what we are considering that might be relevant to their work. We will make sure that we take up Angus MacDonald’s suggestion.
I think that it would be fair to say that we want to seek information and written responses but, following that, we expect to take further oral evidence to address the general issue of making sure that localised concerns are dealt with by having a robust regulatory framework. Many issues have been flagged up today that we are keen to address with the relevant agencies, including Scottish Water, the regulator and the Government. Is that acceptable?
Thanks very much. That is brilliant.
Thank you very much for your attendance.10:14 Meeting suspended.
10:18 On resuming—
NHS Scotland (Protection for Employees) (PE1647)
The second new petition for consideration is PE1647, by Angus O’Henley, on protection for all employees of NHS Scotland. Mr O’Henley is unable to attend the meeting, but members have a copy of the petition and a note by the clerks.
The petition calls for the creation of a specific statutory offence covering the assault of any employee of NHS Scotland while that employee is providing any patient service. The petitioner acknowledges the protection that is provided to certain employees under the Emergency Workers (Scotland) Act 2005, but considers that there is a gap in the legislation that means that other employees in the national health service do not have the same protection. Mr O’Henley says that those staff are often on the front line—for example, administrative or reception staff, porters, cleaners or auxiliary and trainee nurses.
The clerk’s note refers to the Scottish Parliament information centre briefing, which advises that any such assault can already be prosecuted under existing criminal offences, such as the common-law offence of assault. Paragraphs 5 to 7 of the clerk’s note provide further context in respect of the 2005 act. It notes that the petition refers only to “assault” and does not refer to “obstruction” or “hindering”, which are also offences under the 2005 act. Section 5 of the act offers protection on hospital premises to anyone who assists doctors, nurses, midwives or ambulance staff without requiring that that be in an emergency situation.
The SPICe briefing also refers to the Protection of Workers (Scotland) Bill, which was introduced by Hugh Henry in 2010. Although there was no disagreement that workers who serve the public deserve protection, there was no agreement on how best that might be achieved without duplicating existing legislation, and the bill fell at stage 1.
Paragraphs 17 to 21 of the clerk’s note cover sentencing. It is suggested that, if the issue is highlighted, sentences might become tougher if the courts take account of any aggravating factors.
Do members have any comments or suggestions on the petition?
Just to clarify, does the petitioner suggest that the offence of assault in a medical or NHS environment should carry a tougher sentence?
My understanding is that the intention is to underline the seriousness of such an assault. If my recollection is right, the context for the 2005 act was the example of firefighters being called out to emergencies and then being ambushed by young people, who threw stones at them and so on. In an emergency, staff are already at risk; the petitioner wants the courts to recognise assault in such situations as an aggravation.
The debate that emerges from that is whether it is just emergency workers who are at risk. To some extent, Hugh Henry’s bill was prompted by the Union of Shop, Distributive and Allied Workers and the recognition that people who work in retail can often be put in situations in which they are at risk.
All the legislative proposals were driven by the recognition that assaulting people when they are going about their business, doing a job on the front line and trying to provide a service is a significant issue that we would want the courts to take into account. The argument is about where the balance lies in legislating for that.
The proposal is to take an existing part of the common law and replicate it as a new offence; it would not extend any new protections, because the law to protect people is already there. As you say, however, the issue could be highlighted.
The same argument applies to stalking legislation and perhaps—I have not looked in detail at it—domestic abuse legislation: although such crimes can be pursued as a breach of the peace or an assault, they can also be placed in the context of a broader set of behaviours. Hate crime is the same—it is about trying to recognise the context and the motivation.
I sense that the committee is sympathetic to the issue that Mr O’Henley identifies in his petition. We recognise that it is not just doctors, nurses and other medical staff who are affected. Many people work in the health service and try to do their best, and for them to be assaulted in the workplace is not acceptable. The question is whether the petitioner’s proposals would solve the problem. It might be worth while testing that and asking for a response from people who might have an interest in the issue.
The petition seems to apply to NHS employees. However, as you said, convener, the proposal could be extended to assault at work, wherever that may be—it could cover bus drivers or retail workers, for example.
I do not want to put words into the petitioner’s mouth, but he seems to say that it is not just people who have a medical role in a hospital who are placed at risk. We have all heard anecdotal evidence of people who are trying to do their best becoming the focus of aggression—general practice receptionists, for example, or hospital porters. There is no distinction—we want to acknowledge that the folk who do those jobs are equally deserving of protection. The question is whether the model suggested by the petitioner would work and would have the desired effect.
There is also the ticket collector on the train. There is a law to protect people from any assault. I have seen such situations when I ran factories—people were assaulted, we got the police in and the person was charged. Why cannot we use that law?
My question relates to the assault of a fireman or ambulance paramedic attending an emergency—which you highlighted, convener, and about which we have anecdotal evidence—and whether that constitutes a higher level of offence. That is where I come at this from. I would be interested to hear from the Crown Office, for example, on the practicalities of such an approach. We all recognise that the petitioner is highlighting an issue, but the question is whether there is a practical solution.
I suggest that we try to find out some more. We are not completely ruling out the petition; we should test it against the Scottish Government’s views. Mr Whittle is right to suggest that we contact the Crown Office and Procurator Fiscal Service. It would also be interesting to know whether the unions in the health service have a view. I do not know whether the Law Society of Scotland routinely comments on such questions, but it is likely to have a view on whether legislating would add protection, so it would be worth hearing from it.
That would be a good start for us.
We will contact the unions, the Royal College of Nursing, the British Medical Association and NHS Scotland. Do members think that the Health and Safety Executive would have a view? Are there further suggestions of organisations from which we could seek information?
The Crown Office will definitely have a view on how the proposal could be carried out.
We recognise that the petition highlights an issue. Whether the suggested solution is the right one is a separate question, but we consider it worth examining it further. Is that agreed?
Members indicated agreement.
Alzheimer’s and Dementia Awareness (PE1480)
Social Care (Charges) (PE1533)10:26
The next item on the agenda is two continuing petitions. PE1480, by Amanda Kopel, on behalf of the Frank Kopel Alzheimer’s awareness campaign, is on Alzheimer’s and dementia awareness, and PE1533, by Jeff Adamson, on behalf of Scotland against the care tax, is on the abolition of non-residential social care charges for older and disabled people. Amanda Kopel is in the public gallery—I welcome her to today’s consideration of her petition.
Members will recall that we took evidence from the Cabinet Secretary for Health and Sport when we last considered the petitions. We discussed a number of issues, including the remit and timescale for the feasibility study. Members will see from the papers that the study is likely to be completed in the summer.
Do members have any comments or suggestions for action?
We have to await the results of the feasibility study; we should also request that the cabinet secretary meets the petitioner. We can then consider the results.
It is important for us to look at the feasibility study. My sense is that members feel strongly that there is an issue here. There is also the question whether we should separate our consideration of the two petitions. Although they deal with the same area, they might be pursuing slightly different things.
Human rights are an issue in relation to the abolition of non-residential social care charges for older and disabled people. People need access to services in order to achieve their potential, yet they are being charged for those services. If charges prevent them from accessing services, they may need more support at a later stage. It is a counterintuitive approach, because it does not focus on prevention and early intervention, and it creates more problems further down the line.
There is some recognition that the feasibility study itself is important. We want to be reassured about the timescale and expectations for that study. Also, it has been said that there are cost implications, but it appears that no work has really been done on that issue.
Do members have any further comments?10:30
The feasibility study is key to how we proceed with the matter. However, I think that there is a strong argument for separating the two petitions.
We might consider that at a later stage.
We should check whether the Cabinet Secretary for Health and Sport would ask her officials to meet the petitioners to discuss the feasibility study, which I think would give people confidence. Perhaps both petitioners could get the opportunity to focus on their concerns with officials. The campaigns have been particularly effective in highlighting an injustice and there has been some movement, so it is important that that communication continues.
Do members agree with what has been suggested?
Members indicated agreement.
We recognise the importance of the myriad issues in the two petitions. We do not want to let go of them at this point and are keen to see the outcome of the feasibility study. We are particularly keen that that is informed by the views and direct experience of the petitioners.
Adult Cerebral Palsy Services (PE1577)
We move on to PE1577, by Rachael Wallace, which is on adult cerebral palsy services. Members will recall that we took evidence from the Minister for Public Health and Sport when we last considered the petition. We have received a submission from the petitioner and members will see that the clerk’s note provides some additional background information from SPICe. I welcome Murdo Fraser MSP to the meeting—he is here for this petition.
Members may also recall that the minister and her officials considered that a national clinical pathway would not be appropriate for a condition such as cerebral palsy. They proposed that developing practice at the local level is the way forward for now. The Scottish Government has been working with Bobath Scotland on a pilot programme in that regard and will consider what learning from that work can be shared with health boards. We understand that Capability Scotland has conducted a national mapping exercise on therapy provision for cerebral palsy in Scotland. As that has only recently concluded, we are yet to have the Scottish Government’s view on what action it will take in response to the findings.
The petitioner takes the view that the Scottish Government should take the lead at a national level, in the form of either a national clinical pathway or another framework, to ensure that adults with cerebral palsy can access continuity in the specialist care and services that they require.
Do members have any comments or suggestions for action? It might be useful for Murdo Fraser to make some comments to help inform our views.
Thank you for letting me address the committee, convener. I had a discussion with the petitioner about the evidence session that was held with the minister a few weeks ago. Although some very helpful things were said during that session, I think that the petitioner’s biggest concern is that we lose sight of the ambition to have a national clinical pathway. The minister said that the Government was looking at developing local pathways, and the petitioner’s concern is that that might lead to a patchy picture across the country, with some health boards no doubt doing well and taking local pathways forward expeditiously, but other health boards doing less well. We know that many health boards are suffering with financial issues and staff shortages, so they might not see the development of local pathways as a priority.
The petitioner was very keen to reinforce the message that she wants to a national clinical pathway to be taken forward with national leadership from the Scottish Government, rather than that work just being left to the discretion of individual health boards. The on-going work with Bobath Scotland and Capability Scotland has been very helpful, and it will be interesting to see how it develops. It will also be helpful to get feedback from those exercises in due course. However, in terms of getting the impetus that the petitioner would like to see, we are keen that the issue of a national clinical pathway is not lost sight of.
I wonder whether you can help us with a point that the petitioner refers to in her response. Are there comparable conditions that have national clinical pathways? I think that that is the issue that we are wrestling with. I am not quite clear, even from the evidence, about why there would be resistance to having a national clinical pathway. Are there other conditions for which a national clinical pathway would be expected?
I do not have enough medical knowledge to say how cerebral palsy fits into the hierarchy of conditions. With motor neurone disease, for example, we saw a great deal of impetus over the past year when the Scottish Government provided a lead to make sure that local health boards provided additional support for those who suffer from that condition. That is a sort of parallel example: if the Government determines that something needs to be addressed, it can give a lead and make sure that health boards deliver at the local level and are not left to decide individually what actions to take.
Children with cerebral palsy expect consistency in support across the country, but the transition to adulthood is causing the problem.
That is absolutely the point. According to the petitioner, children’s services are quite robust; children with cerebral palsy are generally well cared for and get the attention that they require. The problem is with the transition to adulthood, where the support for too many people seems to fall off the edge of a cliff.
The baseline is that everybody is an individual with separate needs, but that does not prevent our having a national framework with a robust and consistent approach to establishing those individual needs. Members can correct me if I am wrong, but a framework that enables individual treatment protocols to be established seems realistic.
I was surprised by the petitioner’s evidence that she has to seek out her own physiotherapy and identify whether the therapists have the knowledge to deal with her condition, and that there was no national guidance on the issue.
My sense from the committee is that we want to pursue the matter a little further and ask the Scottish Government for the findings from the pilot programme and the mapping exercise and for a further assessment of the way forward that is informed by that work. That should include consideration of whether it will produce national guidance for health boards. I suspect that, for the petitioner and the committee, the technical nature of the language used—whether it a pathway or something else—is not as important as having a national view of what it is reasonable for an adult with cerebral palsy to expect and to access.
Whether the guidance is national or local, we need to know the timeframe.
We will write to the Scottish Government in those terms and seek a timeframe for the pilot programme. It has just been confirmed that the pilot is finished, so we can get that information.
The important thing, as Murdo Fraser said, is the element of putting something national in place.
The committee has found the argument for national guidance convincing. There may be a compelling argument against it, but we have yet to hear it. We are keen for the Scottish Government to give us information on the pilot programme and the mapping exercise and to tell us whether it will produce national guidance for health boards, precisely to address the point made by Murdo Fraser: when people make budgeting decisions, the context of having national guidance becomes very important. Do members agree?
Members indicated agreement.
School Libraries (PE1581)
The next petition is PE1581, which was lodged by Duncan Wright on behalf of Save Scotland’s School Libraries. The petition calls for a new national strategy for school libraries that recognises the vital role of high-quality school libraries in supporting pupils’ literacy and research skills.
Members will recall that, at our previous consideration of the petition, the Deputy First Minister and Cabinet Secretary for Education and Skills said that he had been persuaded by the petitioner’s argument and that his intention is to formulate such a strategy. The petitioner welcomes the Deputy First Minister’s commitment, acknowledging that it
“fully supports the original aim”
of the petition. He seeks detail on how the strategy will be developed and delivered, who will be involved in any consultation, what the timescale is for the strategy to be in place and whether, as part of the strategy, national standards will be established for schools across Scotland.
The petitioner suggests that the Chartered Institute of Library and Information Professionals in Scotland should be involved in the development of the strategy and that it would be of great benefit to the future success of the strategy if Mr Swinney explained the rationale behind it to representatives of the Convention of Scottish Local Authorities and the Association of Directors of Education in Scotland.
Do members have any comments or suggestions for action?
The Deputy First Minister’s evidence to us was very positive, and the petitioner has recognised that. There is no issue with that, but it might be an idea to respond to the petitioner’s request for further detail on the strategy. We might pick out certain elements of what was said during evidence. However, I do not think that anyone is unhappy with what is happening at the moment.
We must be close to drawing a line under the petition.
The only question is whether we close the petition now, given that the original request by the petitioner has been granted, or whether we look for further information first. I suppose that the petitioner wants some confidence that it is not just that a strategy may be developed at some point in the future but that there is now a timescale for action and that the Government is addressing the concerns of COSLA and ADES, which were more sceptical.
Yes, the petitioner asks specific questions that he clearly does not know the answers to, so it might worth writing to the Deputy First Minister.
Normally, I would suggest that we close the petition, particularly given the Deputy First Minister’s full support for the petition’s original aim and the fact that he has given a commitment to deliver a national strategy. Nevertheless, the petitioner is right to seek further clarification, and I am happy to go along with other members on this.
Okay. We can agree to that action while reflecting that the question of whether to close the petition now was finely balanced and that the expectation is that, when we get the information from the Deputy First Minister, that is what we expect to do. We should also recognise both the effectiveness of the petitioner and the fact that the Deputy First Minister moved in a very positive way from the petitioner’s point of view.
Members indicated agreement.
Healthcare Services (Skye, Lochalsh and South-west Ross) (PE1591)
The next petition is PE1591, by Catriona MacDonald on behalf of SOS-NHS, on the major redesign of healthcare services in Skye, Lochalsh and south-west Ross. I welcome Kate Forbes MSP and Rhoda Grant MSP, who are present for the petition. Members have a note by the clerk, along with the most recent submissions from the cabinet secretary and the petitioner.
The cabinet secretary’s submission appears to indicate that she is confident that appropriate consideration has been given to any unintended consequences of the redesign and that she is content that due process has been followed. She also makes clear her expectations of the work that is required by NHS Highland to ensure full engagement with local stakeholders. However, the petitioners appear to still have concerns that they are not being listened to or fully engaged with. That is perhaps a matter for the board to consider.
Before I ask members for their comments or suggestions, I ask Rhoda Grant and Kate Forbes whether they have a view on the progress that has been made or on the response from the cabinet secretary.
The most important thing that you just mentioned, convener, was Shona Robison’s letters about the expectations on NHS Highland. The issue concerns matching up what has been promised and expected and what people feel is really happening on the ground. There is also an issue around the engagement with the community. Most people in the north end of Skye, in particular, still have concerns, and they must have confidence in the redesign and what it will mean for them. We have raised concerns in the past, but the particular issues of concern at the moment are around care beds in the north end of Skye. The last time that I was here, I mentioned the closure of another care home, and there is growing pressure in the area on care beds for elderly people, palliative care and emergency care. That remains a concern. In addition, Ronald MacDonald has previously submitted evidence about the mandatory national guidelines and the need to take account of the density of the population in the north end of Skye.
My role this morning is to represent the views of those who have continued to write to me with their concerns about the current provision of beds and emergency services and about the need for the redesign process to take into account the population density.10:45
I should add that other parts of Skye, such as the south end, which is where the redesign at the moment suggests that the new hospital should be, are content, although they have also made it clear that they would like to see more services being committed to in the north end of Skye. The question for the committee is whether it is worth asking for more evidence or asking the petitioners to come back and make their views known—as a final point—about whether what has been expected and promised marries with what people sense on the ground.
I do not disagree with anything that Kate Forbes has said. I would, however, add that there are concerns about the ambulance service—both patient transport and emergency ambulances—and the fact that people have to go to Broadford. There is an ageing population and public transport is not what it would be in a city—it is pretty sparse. If people are unable to drive, their ability to access health services and, indeed, visit people becomes a big issue. There are promises of better care in the community and the like, but nobody has seen the shape of that, and press reports say that NHS Highland is looking to make more major savings from its budgets. If I was sitting there, I would be wondering how it was going to deliver all those services with a budget that is contracting substantially.
I have tried to think what the committee can do to help, and I throw this out as a suggestion. Would it be possible for the committee to hold a round-table meeting with the health board and the petitioners, to see whether some of the issues that are concerning them could be answered in that way? I feel that the committee is just being passed backwards and forwards, and we do not appear to have resolved very much for the petitioners. I do not know whether that is a way forward that the committee could examine, or, indeed, whether the petitioners and the health board would be willing to participate in such a meeting.
I may be at odds with the petitioner, but I have said all along that we need to get on and have a new hospital in Skye, because neither hospital is fit for purpose any more. Any delay is going to mean that people are going to have to travel not to Broadford, which is bad enough, but to Inverness, which will be even worse. We need the new hospital, but we need to ensure that the whole community is content with the services that they are receiving and know that they will be able to access healthcare without barriers in their way.
I am interested in the committee’s views on what we should do. The Scottish Government has said that it is content that due process has been followed, but the local people clearly do not agree with that, and I am not sure whether a round-table discussion would resolve that issue, although it might highlight the individual anxieties. I would not want to misrepresent the role of the committee—it is not a scrutiny committee in the sense that it could establish X, Y and Z and come to a judgment on what has been done. We do not have that role. We do not want to continue the petition unnecessarily in the expectation that there will be a resolution that we cannot achieve for the petitioners. We have to be honest about what we can and cannot do.
I am interested in members’ views on the issue. There is a balance for us. Should we close the petition on the basis that the issue is not going to be resolved through the petitions process, or is there something useful that we can do that would illuminate some of the challenges and bring the community together by providing the services that they are looking for and want to have confidence in?
You have alluded to what I was going to say, convener. The cabinet secretary is content with the process but, at the same time, the concerns of the petitioners or the population in the area have not been allayed. It seems to me that there is a role for someone to play in somehow communicating between the two to try to find some middle ground. My question is whether that is the committee’s role. Is that what we do? At the end of the day, there are two opposing ideas based on the same evidence.
You make valid points, convener, as does Brian Whittle. Initially, I had a great deal of sympathy for the petition, and I have been keen for the committee to do all that it can within its powers to assist the petitioners, given the valid concerns that they have raised and that clearly continue among the population in Skye. Perhaps the concerns are not so much on the Lochalsh side, but they certainly continue in north Skye.
The cabinet secretary has confirmed that she is content that due process has been followed. As Kate Forbes mentioned, the south end of Skye is content and the north end is not so happy. Frankly, I do not see how that will change, no matter how long the committee deliberates on the issue. I think that the process has been exhausted. I do not see any benefit in having the petitioners back in to give further evidence, as Kate Forbes suggested, and I do not see the benefit of having a round-table session, because that would basically just prolong things and, clearly, the hospital has to be built as soon as possible. Given that we will not get the whole of the community to be content, I propose that the petition be closed, although I do so extremely reluctantly because I understand the concerns. As I said, we have exhausted the process, so I move that we close the petition.
I am interested in other members’ comments on that. I have a question for Rhoda Grant and Kate Forbes. We have the analysis that was done by Ronald MacDonald, and there is a sense that the process was not done properly. I get the feeling that specific and definite points have not been responded to. Would people have more confidence in the process if we asked the cabinet secretary to directly address those points, or should we just discontinue the petition? I see the force of what Angus MacDonald has said, but perhaps we can do that one thing as a final shot. My sense is that the petitioners feel that those questions have just been ignored rather than addressed. We can ask the ministers to address them. Do you think that that would help?
Initially, the petition asked for a review. I have asked people whether their main concern is about the process, the outcome of the process—in other words, where the hospital is—or a general sense of downgrading of services. Repeatedly, people have told me that their main concern is about confidence in the process. If the committee asked the cabinet secretary to ensure in whatever way that everything has been followed correctly, that would be profitable.
I will ask the devil’s advocate question. Do people complain about the process only when they do not like the outcome? Even if we were to establish that the process was right, will that change anything for someone in the north of Skye who is not happy? That is not to belittle or demean their concerns. Do we address concerns through looking at process or is there a next stage that allows the concerns to be addressed? It cannot just be about the location of the hospital; it is about all the things around that such as transport and ambulance services.
I broadly agree with Angus MacDonald, except that there seem to be unanswered questions. As Angus said, it is not worth while to have people back in to give evidence, but maybe we should send a letter to the cabinet secretary highlighting the specific concerns on access to primary and emergency care and asking for a response. That is the only reason to keep the petition open, and it would allow us to try to tie up the loose ends. I am not saying that it would give the petitioners the answer that they want, but at least we would ask those questions for them.
I entirely agree with Rona Mackay. In my experience on Mull, where we had exactly the same situation, we resolved the issue by going in and talking about the reduction in access to primary and emergency care, which helped. I do not support closing the petition now, because I believe that we should send one more letter to the cabinet secretary. It is about confidence being felt by the people in the north end of the island. We had the same issue on the Ross of Mull. We got confidence back and we resolved the issue, and the cabinet secretary confirmed that.
I would be content with that course of action.
To respond to Kate Forbes’s point, we should ask the cabinet secretary and maybe also the health board about what measures they are putting in place to build confidence, because the process has stalled and nobody is benefiting from that.
I appreciate what the committee has done in going back and forth, and I know that the petitioners appreciate that, but at times it has felt as if the same answers have been coming back. It would be good if, in your letter, you could press the point about a tangible outcome that can instil confidence.
Okay. We have agreed to continue the petition.
As is happening across the country, the Parliament will reflect on the tragic events in Manchester with a minute’s silence at 11 o’clock. I want us to participate in that, so I suspend the meeting now.10:56 Meeting suspended.
11:03 On resuming—
Armed Forces (School Visits) (PE1603)
We move on to the penultimate petition on the agenda, which is PE1603, on ensuring greater scrutiny, guidance and consultation with regard to armed forces visits to schools in Scotland. I understand that Mairi Campbell-Jack, who is one of the petitioners, is in the public gallery. I welcome her to the meeting.
Members will recall that we took evidence from the Deputy First Minister when we previously considered the petition. Having had the chance to consider that evidence, the petitioners have made a further submission, which we have in our papers.
The petitioners’ submission covers a range of issues, including the content of careers advice information and data that they have compiled about armed forces visits to special schools in Scotland. The petitioners urge the committee to recommend that no such visits are made, that a child rights and wellbeing impact assessment is applied to armed forces visits and that good-quality data on armed forces visits to schools is requested.
Do members have any comments or suggestions on how we might take forward the petition?
I think that we are going to take evidence from the armed forces about visits to schools.
We were offered a briefing. We would need to think about what form that information would come in, but it would be useful. We could usefully test with the armed forces questions that the petitioners raise, particularly on special schools, data about visits and a child rights and wellbeing impact assessment.
We had a really positive evidence session with the Deputy First Minister, but we could do things to follow that up, given some of the things that he committed to. I am concerned about the response to the freedom of information request that shows that the armed forces made 13 visits to special schools. We could certainly bring that up if we have another evidence session.
One of the commitments that the Deputy First Minister made was on the petitioners’ request for good-quality data on armed forces visits to schools. He asked the committee to specify what data would help. I am not sure whether we have provided that information so that he can carry out that commitment. We need to address that aspect, because he made an important commitment on it.
Do you have any specific suggestions about information that we should have, Rona?
There should be information about numbers and areas—for example, on what schools have been visited in what postcode areas—so that we can see whether any pattern emerges.
The petitioners requested that a child rights and wellbeing impact assessment be applied to armed forces visits to schools. We could also press for that, but it might come after we have had a briefing from the armed forces. The data point could certainly be followed up now.
I wonder whether the purpose of the visits is also an issue. That came out of the Deputy First Minister’s evidence. To an extent, he addressed the question of careers visits, but one of the petitioners’ concerns is that softer visits by the armed forces are used for recruitment purposes. The other side of the argument might be that those visits are about facilities and about knowledge and information opportunities that the armed forces can bring into a school around health and fitness or whatever. I think that the issue that is at the heart of the petition is about pulling out whether the visits are used for recruitment purposes.
The Welsh Government has implemented some things around this issue. In my work as convener of the cross-party group in the Scottish Parliament on the armed forces and veterans community, I have found out useful information on that. I would like to see what the Welsh Government has come forward with, because that might help us.
I presume that there is a spectrum of views, from the view of people who think that the armed forces should not go into schools at all to that of those who think that, if there is a connection between a school and the armed forces, that should just go ahead. However, we want information and data to give us an idea of what the patterns are and where the balance is. To inform our views, perhaps it would be useful to know how the Welsh Government has responded to the question.
I am not quite sure where we are on having a briefing from the armed forces.
That is in hand, and we will pursue it.
So it will happen.
The armed forces offered a briefing, but the question is about the format that it will take.
We can ask for the director of recruiting for Scotland for the three armed services to come to the briefing—there are appointed seniors in that regard—because we do not want just a generic report. That would give the briefing some substance.
That is helpful. Again, the committee is alive to the balance that we want to strike. We could have greater confidence in the process if we knew where the armed forces were going and why they were going there. For example, is there an issue about the work that is done with special schools? The purposes and cohorts of those schools vary, and there might be different work with different schools.
From the petitioners’ point of view, part of the problem has been that getting information about armed forces visits has been difficult. If we could make that information more open and transparent, that would be a first step in dealing with the petition.
We will defer further consideration until we have had the briefing on armed forces visits to schools by a representative of the armed forces. Maurice Corry’s point about who we hope will do that briefing is useful. In the meantime, we can forward to the Deputy First Minister our suggestions on data. Is that agreed?
Members indicated agreement.
Enterprise Agencies (Boards) (PE1639)
The final petition is PE1639, by Maureen Macmillan, on enterprise agency boards. I welcome back Rhoda Grant for this item.
Members will recall that we agreed to seek the petitioner’s view on the ministerial statement by the Cabinet Secretary for Economy, Jobs and Fair Work. We have now received the petitioner’s views. Do members have any comments or suggestions for action? I know that Rhoda Grant has liaised with the petitioner.
I have a couple of points. Given the outcome of the review, people are pleased that the board of Highlands and Islands Enterprise has been retained, but it is not clear what will happen as a result of the review. We know that there will be an overarching, cross-cutting board, although we do not yet know its membership or its role, other than that it will be statutory. Could the petition be kept open to see what happens and what the impact will be? I am afraid that some of the local information that I have had is that people are afraid that what will happen will occur by the back door rather than up front and publicly.
Another concern that has been expressed to me and which the petitioner has spoken to me about is that, when the original proposal was made, the board was seen as the last part of HIE that remained. People were concerned that, as a result of budget cuts, HIE’s reach had diminished over the years, and they wanted a return to the HIE of the past. Given Brexit and the amount of money that has flowed from Europe to the Highlands and Islands, there is real concern that the Highlands and Islands will suffer and that it needs a strong voice in its corner to speak to the Government about the allocation of resources and ensure that it understands peripherality in the way that Europe did but in which neither of our Governments has ever done, regardless of their political shade—I am not making a political point. There is a role for a strengthened HIE in representing the area—otherwise, we could find ourselves in a difficult situation.
I suggest that the committee pass the petition on to the Rural Economy and Connectivity Committee for it to look at HIE’s role in more depth or simply hold on to the petition and see the outcome in relation to the cross-cutting board before deciding what to do with it.
The petition has been successful in that HIE has been saved. Personally, I support a strong HIE with a strong social remit. All enterprise boards should have a social remit because they are about people and place, but that is particularly important in the Highlands and Islands. The question for the committee is whether that argument should be located with us. My sense is that the petition cannot be the vehicle for that debate, because it is specific, but nothing would preclude someone from bringing another petition to the committee on those questions.
Does Angus MacDonald have a view on what the Rural Economy and Connectivity Committee is doing on the issue?
I am not on that committee—I am on the Environment, Climate Change and Land Reform Committee—but I whole-heartedly agree with you, convener. I was delighted that the Government performed a volte-face in the afternoon of 20 April following the Public Petitions Committee’s evidence session that morning. That was the right thing to do. The Government’s decision to ditch the previous plans was a result of pressure from members on all sides.
As I said on 20 April, I believe, having had direct experience of HIE and the Highlands and Islands Development Board before it, that it is imperative to retain the board of HIE. Having said that, the petition has done its job—as have the members who campaigned on the issue—and, as you have said, convener, it is perhaps time for it to be closed. However, there is an opportunity for the petitioner to come back at a future date should there be any back-door actions, as Rhoda Grant mentioned. I hope that that will not be the case, given that consensus broke out in Parliament on 20 April. I suggest that we close the petition.11:15
Are there any other views?
I agree that we should close the petition, because we have gone as far as we can. The outcome was good. I echo what Angus MacDonald said; there is no point in my repeating that.
It seems that the petitioner has been successful. Rhoda Grant’s question is about implementation, which is different from the question that is asked in the petition.
As a committee, we would be gravely disappointed if the Government was buying time and it simply did the same thing in a different way, and members from across the parties would be gravely disappointed if there was a sleight of hand rather than a change in policy position.
I agree. It is time to close the petition because it has achieved the petitioner’s objective. Parliament will keep a watching brief on the matter—it may be the Rural Economy and Connectivity Committee or another committee—to see whether it comes back in a different form later on.
We heard compelling and powerful evidence from the petitioner about what had been done historically in the Highlands and Islands by an agency with such a remit and responsibility. I have talked before about the generational change and the current opportunities for young people to stay in the islands—such opportunities were lost to my parents’ generation. I hope that the petitioner’s evidence on that had an effect—it certainly had an effect on the committee. That evidence was on the broader context rather than just a theoretical shifting of chairs around a table. We will make it clear to the petitioner that we appreciate the broader questions that the petition highlights and that there is always an opportunity for a petitioner to lodge a new petition that could address those concerns, if necessary.
Does the committee agree to close the petition under rule 15.7 of the standing orders on the basis that the Scottish Government has decided to retain enterprise agency boards as part of its enterprise and skills review and, in doing so, has addressed the petitioner’s specific concerns about HIE?
Members indicated agreement.
I thank Rhoda Grant for attending the committee.Meeting closed at 11:17.