Public Petitions Committee

Meeting date: Thursday, June 15, 2017

Official Report 599KB pdf

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Continued Petitions

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Child Abuse (Mandatory Reporting) (PE1551)

Agenda item 2 is consideration of five continued petitions. The first petition for consideration is PE1551, on mandatory reporting of child abuse, which was lodged by Scott Pattinson.

Members will recall that, following our previous consideration of the issue, we wrote to the Scottish Government to establish why it was waiting for the outcome of the UK Government’s consultation on the issue, and whether it had a cut-off point at which it would develop its own approach. We have received a response from the Minister for Childcare and Early Years in which he refers to submissions provided to the session 4 committee, which included views that if the Scottish Government was to develop its own approach, it would require a public consultation.

The minister clarifies the scope of the UK Government consultation on the matter and appears to suggest that the Scottish Government would simply be duplicating that consultation if it explored options for its own approach. The minister states that the Scottish Government will consider the findings of the UK Government consultation as soon as the results are published and that those results will be considered within

“the wider context of the ... child protection landscape in Scotland”,

taking account of existing legislation. However, there remains a lack of certainty about when the UK Government will publish the results of its consultation.

The minister also states that mandatory reporting will be considered in the context of the child protection improvement programme and identifies that the issue may be considered as part of the review of all

“current legislation on abuse and harm”.

The petitioner’s submission indicates that he does not consider that the Scottish Government has answered the question of why it will not establish its own approach to mandatory reporting.

I was struck by what came out in the submissions that people have provided from a range of organisations. People understand the motivation for the petition but believe that it would have an unintended consequence. It seems to me that people are quite happy to participate in the argument and the debate around mandatory reporting so I genuinely do not understand why we are waiting for the results of the UK Government consultation, which is presumably just for England and Wales. In their evidence, people also say that the landscape in Scotland is different, in particular because of the children’s hearings system.

I think that it is not about deciding whether mandatory reporting is the right approach. It is about saying that mandatory reporting should be looked at and arguments should be made one way or another so that a conclusion can be reached for Scotland.

I agree. A Scottish consultation would be specific to what a future law might cover. There are anomalies that we have up here that are different from those in England. I think that we need to drive at the fact that it should be country based because whatever happens—whatever is agreed by the UK Government—we still then have to come back to considering the law in Scotland.

It feels to me as though we should have the debate and come to a conclusion on whether we agree with mandatory reporting. There are some compelling arguments in both directions. I do not think that the idea that it would be duplication makes much sense. The logic of that is that we would not do anything on anything that a UK Government might consult on.

I think that there are two separate things. The arguments are really interesting around how mandatory reporting might inhibit a young person from disclosing. On the other hand, there is the view that there should be mandatory reporting because of cases where hierarchies within systems moved the problem on rather than confronting it, even though child abuse was reported to them. Sarah Nelson’s submission talks about the culpability of people at the top of an organisation who do not listen when child abuse is reported. If there are abusers operating within a system, it is in their interests for an investigation to be closed down.

I think that the petition is in some part trying to deal with that. It is saying that if someone does not report child abuse, there is an issue and maybe one of the reasons why people are not reporting is because they are party to the abuse. That is a difficult thing to deal with but I think that it is part of the issue.

How should we take the petition forward?

We should write to the Minister for Childcare and Early Years and ask him where we are with the timeframe and what steps he or our Government plan to take regarding the matter.

Would it be reasonable to say that we do not accept the point about waiting for the UK consultation because it is not a UK consultation, it is a consultation by the UK Government that only covers part of the United Kingdom?

Would it be reasonable for us to highlight the following points? We do not accept the argument for not consulting. We accept that there is clearly a very challenging debate on the consequences of mandatory reporting, and we are not taking a view on that, but we think that the matter should be decided in the context of the child protection system in Scotland. It is legitimate for the petitioner to argue the case, and the Scottish Government should deal with that aspect.

Those points are fair, and should be included.

We will write to the Scottish Government to say that we recognise that there is a debate on mandatory reporting, which includes the benefits and consequences that some of the children’s organisations have highlighted, but that consideration of the matter should not be determined by the timetable for a consultation that covers the rest of the United Kingdom. From our evidence, it appears that there are plenty of people in Scotland who want to engage in the discussion.

Members indicated agreement.

We are grateful for the response that we got from the consultees—

Sorry, convener—did we get a response from the Crown Office on how things might proceed?

That may be something that it is looking at.

I am thinking about whether the requirement is enforceable, and how easy it would be to prosecute in such circumstances.

Okay—that is very useful.

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Criminal Injuries Compensation Scheme (PE1612)

The next petition is PE1612, by Graham McKinlay, on a change to the criminal injuries compensation scheme’s same-roof rule. We last considered the petition at our meeting on 2 February, when we agreed to seek from the Scottish Government more information on why it has no plans to establish a separate compensation scheme, and to invite the Government to respond to the written views from Victim Support Scotland, which considered that the process of claiming for compensation for a criminal injury should be the same for all victims in order to avoid discriminatory practices of any kind.

We have received a response from the Minister for Community Safety and Legal Affairs, which refers to a recent judicial review of the same-roof rule. The outer house of the Court of Session upheld the rule as being

“proportionate and within the legitimate exercise of the discretion accorded to Parliament”.

The minister notes that it would be for the UK Government to amend the current scheme. The minister states the Scottish Government’s commitment to ensuring that the individual needs of all survivors are met through integrated services at local level, and she identifies a range of factors that explain why the Scottish Government is not pursuing its own separate compensation scheme. Those include uncertainty about likely demand, the range of circumstances that could be covered and the additional administrative costs that would be associated with setting up application, investigation and assessment processes.

The minister refers to other strategies and frameworks, including the equally safe strategy and the “SurvivorScotland: Strategic Outcomes and Priorities 2015-17” framework, which are designed to ensure that survivors have equal access to the resources and support that are required. She adds that the Limitation (Childhood Abuse) (Scotland) Bill will remove the three-year time-bar barrier for all survivors to whom it applies.

Members will know that stage 3 proceedings on that bill are scheduled for next Thursday. The petitioner indicates that he is pleased that the matters that he raises in his petition have been taken into consideration. He notes that there is no timescale for changes to be implemented and refers to the adage about closing the stable door after the horse has bolted. However, he indicates that he feels that things are moving in the right direction, and expresses his hope that the bill

“may ensure that steps are taken … to do more to prevent abuse taking place thus negating the need for compensation”.

Do members have any comments or suggestions?

The only point that strikes me is the uncertainty around the number of people whom the legislation might affect. I do not see how that is relevant. We should not make legislation on the basis of the number of people whom it might affect.

I absolutely agree with that view: I do not feel that the argument about numbers is strong. There are means by which that issue could be worked out. It does not make sense that a person who was entitled to compensation would not qualify on the basis that 10 other people might get beaten up that month.

It is encouraging that the petitioner feels that there has been progress and that things have been moved forward a bit. For that reason, the argument around why there would not be compensation was not terribly strong. The question is whether we can add anything useful at this point, given that, although the abuse inquiry does not have a remit to look at compensation, things will certainly come out of it that will mean that that has to be revisited.

All that having been said, I am struggling to find something that we can do to take the petition any further forward.

I agree that the petition has run its course, but it has to be stressed that it is a prime example of how pressure can be put on the Scottish Government via this committee, which clearly has an effect. It is encouraging that the petitioner has welcomed the fact that the matters raised have been taken into consideration and that they may be addressed in the near future. The petition has gone as far as the committee can take it, and it should be closed.

Members indicated agreement.

We agree that the petition should be closed. We acknowledge that the petitioner says that things are moving in the right direction and that progress has been made, which is in no small part due to the petitioner’s having raised questions that most people probably would not have been aware of. We also recognise that Victim Support Scotland supported the petitioner in acknowledging that there is an issue and that the Limitation (Childhood Abuse) (Scotland) Bill is a vehicle through which much of it can be addressed. If aspects of his concerns remain, the petitioner is afforded the opportunity to petition on them in the future. We recognise that the petition has informed and shaped much of the debate, which has been helpful.

In that case, if members agree, we will close the petition on the basis that there has been an explanation for the rationale, although we are not concerned about the numbers—we do not think that the number who will be affected by the bill is relevant—and progress has been made in the bill.

Members indicated agreement.

We also encourage the petitioner to follow the bill’s progress towards royal assent and implementation, and to see how it addresses over time the issue that is raised in his petition. As we have said, if the petitioner believes that sufficient progress is not forthcoming, he may be able to submit a petition in the same, or similar, terms in a year.

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Pathological Demand Avoidance Syndrome (PE1625)

The next petition is PE1625, by Patricia Hewitt and Mary Black, on wider awareness, acceptance and recognition of pathological demand avoidance syndrome.

During our previous consideration, we agreed to write to the Convention of Scottish Local Authorities and integration joint boards to establish what approaches are used on the issue, and to identify what support mechanisms and resources are in place. We received four responses. COSLA did not respond because it considers the matter to be for individual local authorities.

The submissions from North Ayrshire and NHS Western Isles health and social care partnerships note that PDAS is not a recognised condition in the manuals that are considered to be the gold standard for autism diagnosis. North Ayrshire and Falkirk health and social care partnerships suggest that there needs to be more research before a decision can be made as to whether PDAS should be recognised as a stand-alone diagnosis. That is a view that the petitioners support and that they suggest was part of the motivation behind the petition. East Ayrshire health and social care partnership states that social work services recognise PDAS as a “developmental disorder”, and adds that in order to have a PDAS diagnosis, there must first have been an autism spectrum disorder diagnosis. From the submissions that have been received, it appears that although various explanations and phrases may be used, PDAS is not officially recognised.

However, the responses seem to be fairly consistent in their theme of ensuring that whatever support and resources are provided be based on putting the child or young person at the centre of that support, and on working collaboratively. What is not clear is whether that is based on guidance, best practice or different teams or specialists using their initiative and speaking to and consulting colleagues.

In their submission, the petitioners agree that it is “entirely right” for the support and resources to be centred on the individual, but say that there is still work to do to clarify and expand on current understanding. They suggest that there may be benefit in the Scottish Government investigating whether there are examples of best practice elsewhere.

Do members have any comments or suggestions?

09:15  

I am still struck by the fact that there seems to be a huge variation in how the condition is treated in different local authorities. I am struggling to understand why there has not been some sort of research into the condition.

I like the idea of writing to the Government to see whether there are examples of best practice elsewhere in the world. If there is huge variation—if the condition’s existence is accepted in some places but not accepted elsewhere—it seems to me that that needs to be clarified.

I wonder whether the variation is not so much in recognition of the condition but in recognition that there is not just one approach to autism and that autism will reveal itself in people in different ways, so the responses to autism and ways in which people with autism are supported should vary, as well. My recollection of their evidence is that the petitioners argued that some strategies that are used for people with autism are counterproductive for their young people, because they do not fit.

The case has not clearly been made that pathological demand avoidance syndrome exists as a separate condition, but if it is being treated as autism, the needs of the people who have it should be recognised.

I agree with Brian Whittle. It is worth writing to the Government to ask it whether it will look at policies elsewhere and see whether it plans to look at how there could be more consistency in the diagnosis and support that local authorities provide. It is worth another stab. We have almost come to the end of the road with the petition, because there has been quite an emphatic response, but I think that it is worth our while to write another letter.

I agree. We should get responses from more of the integration joint boards—we have had only four. I declare an interest in that I have been a chair of an IJB. IJBs are now beginning to function properly after a year.

There are another 27 IJBs, and from the four responses that we have had we cannot identify a distinct direction of travel. The fact that IJBs are working with healthcare and social care together may give them some clues.

It seems to me that, if you are sitting on an IJB and the gold standard of autism diagnosis is that it is not a distinct condition, that is what you will follow. It is reasonable to ask whether any of the other IJBs have a view, but we should ask what the Scottish Government is going to do. Can it identify research on what happens in other parts of the world? Within treatment of autism, are there specific strategies for people whose families deem them to have PDAS?

We need a dual approach.

Do members agree to seek comments from IJBs and to write to the Scottish Government?

Members indicated agreement.

I am not quite sure why the issue is nothing to do with COSLA. I do not know how it decides whether something is a matter for individual councils or a matter for its general policy.

I would have thought that COSLA would at least have an opinion.

As I said, the IJBs were formed over the past year, and I know from having attended some of the COSLA conferences on the issue that COSLA was waiting for a sort of bottom-up approach.

As Rona Mackay said, it is something that we can at least have one last look at. It is clear from the families’ evidence that it is a big issue in terms of the nature and benefit of the support that their young people might receive.

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Private Criminal Prosecutions (PE1633)

The next petition is PE1633, by Bill Alexander, on private criminal prosecutions. We have received a number of submissions since last we considered the petition.

The Crown Office and Procurator Fiscal Service and the Scottish Government take the view that an individual can petition the court even when the Lord Advocate does not concur. In that regard, the court may direct the Lord Advocate to give his concurrence, or to authorise the private party to proceed without it, by ordering criminal letters to be issued. The Scottish Government concurs with that view and advises that it has no plans to amend the existing legal framework.

The petitioner expresses concern that the cost of challenging the Lord Advocate may be prohibitive for some people. Mr Alexander also considers that there is a potential gap in respect of prosecutions on health and safety matters in Scotland, particularly in the racing industry, which he considers could be addressed by the action that is called for in his petition.

Do members have any comments or suggestions? There is an issue about how the Health and Safety Executive operates in Scotland. I know that it has a Scottish committee, but its submission says:

“Given HSE is not a prosecuting authority in Scotland we have no comment to make.”

The petitioner is trying to address the gap, because if something happens who provides the report? The petitioner considers that the fall-back position should be to pursue the matter as a private prosecution, without first having to get past the Lord Advocate. However, we are getting other advice that the Lord Advocate’s agreement is not needed.

I was inclined towards closing the petition until health and safety issues were mentioned. As you said, when we look into that issue, there seems to be a grey area or gap that needs to be explored. I am not sure what we should do with the petition.

If the Health and Safety Executive is a prosecuting authority in the rest of the United Kingdom, who fills that gap in Scotland? Maybe this is a gap in our understanding, rather than a gap in respect of the work being done. I know that concerns have been expressed that, for example, the fatality level in Scotland’s construction industry is higher than it is in the rest of the United Kingdom, and there is a sense that the Health and Safety Executive does not seem to be alive to that at the local level. Perhaps that is an issue that we should address before we consider closing the petition.

We should ask the Scottish Government what the position is. We should certainly not close the petition; we should raise the matter with the Government.

We should get further clarification. The HSE’s response was:

“Given HSE is not a prosecuting authority in Scotland we have no comment to make.”

That is disappointing, to say the least.

The petitioner’s view that the Lord Advocate can direct Police Scotland to carry out an investigation but has no powers to direct the HSE to carry out an investigation because it is a reserved body.

The only route to take is civil action.

As I say, we need clarification.

We need to look at it from both directions.

It is a fairly live issue in other constituency work that I have been doing, so I would like further clarification.

We are agreeing to ask for comments on the issue from the Scottish Government, the Crown Office and the Health and Safety Executive. I know that the HSE has a Scottish committee, but I do not how it operates. Perhaps we could write to it directly and ask it what that committee’s role is. As Angus MacDonald said, the Lord Advocate can ask for an investigation to be carried out, but he cannot direct the Health and Safety Executive to do that.

That is strange.

There is still a wee bit to go on this petition in order to address the petitioner’s concerns.

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Single-use Drinks Cups (PE1636)

The next petition is PE1636, by Michael Traill, which suggests that all single-use drinks cups be 100 per cent biodegradable.

We initially considered the petition on 30 March. We have received seven submissions from stakeholders including the Scottish Government, COSLA and a range of organisations that are actively engaged in developing initiatives in this area.

The submissions are generally supportive of the motivation behind the petition, but pose some questions about how effective the suggested action might be. Points are made about the distinction to be drawn between biodegradable and compostable cups. There are also issues about the existing recycling and waste management infrastructure, the composition of disposable cups and food packaging, public attitudes and consumer incentives. The submissions go into technical detail about the various processes and possible alternatives to that which is suggested in the petition.

Members will be aware that the Environment, Climate Change and Land Reform Committee has recently announced its plans to examine waste generation and disposal. Do members have any comments or suggestions?

Given that the Environment, Climate Change and Land Reform Committee is due to look at the issue in some detail, it would probably be a good time to refer the petition direct to it. However, I note the suggestion to ask the Scottish Government whether it has any plans for a public awareness campaign on the issue. Perhaps, as the Public Petitions Committee, we should do that in advance of forwarding the petition to the ECCLR Committee.

It would be good to move forward on the petition. Before we refer it on to the ECCLR Committee, would it be reasonable to write to the Scottish Government? We could then share the information on any plans for a public awareness campaign or any other information that the Scottish Government gives us.

There are interesting issues in the petition. On the one hand, the issue seems to be simple—everyone knows that single-use cups are a problem. On the other hand, the matter is more complicated than that because of the technicalities of solving the problem.

Any action that would encourage businesses to provide less complex packaging would be a boon.

We should also encourage packaging that would be less damaging to the environment.

Absolutely.

I agree that the petition raises a lot of interesting matters. I especially like the idea of a public awareness campaign. I had not considered the issue of single-use cups until I saw the petition. Like many such things, until they are brought to our attention, we do not think about them.

Maybe this is just me being ignorant and old, but I thought that paper cups were disposable, and that because they were disposable they were biodegradable and environmentally friendly. Some of the evidence has suggested the opposite to be the case.

That is right. I saw a programme on ready-made meals. It highlighted that the black plastic trays are a problem because they are not recyclable. Our duty is to have a public awareness campaign that brings together all the issues, because the issue covers not only single-use cups, but bottles and other plastics.

If we agree to do so, we will refer the petition to the Environment, Climate Change and Land Reform Committee for consideration as part of its work on Scotland’s approach to waste management. We will also write to the Scottish Government to ask whether it has any plans for a public awareness campaign. We will share its response on our website. Do members agree to that approach?

Members indicated agreement.

I suspend the meeting briefly to allow the witnesses for our next petition to come to the table.

09:28 Meeting suspended.  

09:30 On resuming—  

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Thyroid and Adrenal Testing and Treatment (PE1463)

The next continued petition is PE1463, by Sandra Whyte, Marian Dyer and Lorraine Cleaver, on effective thyroid and adrenal testing, diagnosis and treatment. We are joined by the lead petitioner, Lorraine Cleaver, and by Dr John Midgley. We are also joined by Elaine Smith, who has an interest in the petition. I welcome you all to the meeting.

We are missing Maurice Corry.

Ah well—we will get started.

We have a full agenda today so I ask members and witnesses to keep their comments succinct. Members will be aware that a lot of information from a range of stakeholders has been gathered on the petition since it was launched in 2012. We intend to have a focused discussion.

I will allow five minutes for Lorraine Cleaver or Dr Midgley to make an opening statement.

Good morning. I will start with a bit of history. Nearly 50 years ago, my wife was a technician in Newcastle University’s department of medicine during the time of Professor Reginald Hall, who was an authority on thyroid function, test development and diagnosis. She ran the test for thyroid stimulating hormone—the first to be developed in this country—and, after a while, she began to feel ill. The professor said that, as she was doing the tests, it was just suggestion. However, when she put her serum sample into a test run, lo and behold, her thyroid stimulating hormone level was up in the sky. She was suffering from Hashimoto’s thyroiditis, which ultimately destroyed her thyroid.

I was a lecturer in Newcastle University on an altogether different subject but, naturally, I became interested in the thyroid, how it worked and how it was treated. By a series of coincidences, I got into the position of being able to invent the thyroid function test for free thyroxine and free triiodothyronine that is now used worldwide.

In the 40 years since the late 1970s, I have taken an interest in the development of the testing, treatment and diagnosis of thyroid patients and I have become increasingly unhappy about the way in which testing has proceeded. It is unfortunate that the test for thyroid stimulating hormone that I mentioned is now overreaching. It is supposed to be successful in diagnosing the onset of disease through testing for thyroid underfunction or overfunction—for which it is perfectly suitable—as well as for the control of treatment, for which it is totally unsuitable. Extending its use to a function for which it is unsuitable has led to a significant number of patients being wrongly diagnosed, wrongly treated or not treated at all.

I have written down some general statements because, at my age, I sometimes lose my memory. I hope to convince you that the current paradigm of thyroid deficiency treatment is insufficient and is wasteful of medical time and resource, and that the wrong tests are being administered to control treatment. The approach commits the sin of categorisation. By that, I mean that the diagnosis and treatment are aimed at putting people into the normal range, which is a wide range, and individuals each have their own positions in it. Looking at all the people here today, it would be fair to say that there will be somebody who is very much different from the average, and it is not sufficient just to put someone in the range; you have got to put them in the range in the position where their optimum health is to be found. Since you do not know what that value was when they were well—because it was never measured—there is a lot of flailing about going on to find out what the best solution is. That is what I mean by the sin of categorisation. It is shoehorning people into the normal range and saying, “That’s okay—job done.” That is wrong.

The next problem is the promotion of biochemical markers for the measurement of thyroid hormones in blood over patient presentation. At the moment, the chemistry dominates the presentation of symptoms by the patient. That is the wrong way round. The presentation of symptoms by the patient should dominate over biochemical parameters, which should be suggestions and indicators but not dictators of the situation. That is very important.

All that has been to the detriment of the health, wellbeing and economic activity of mainly female patients, as 80 to 90 per cent of thyroid sufferers are female. We males are a little less aware of the situation than women are in that respect, because at least 2 per cent of women have thyroid problems, which is quite a significant number given the population.

In short, I believe that there should be an unbiased review of present protocols for treatment and diagnosis in the light of new evidence that shows that the single use of thyroid stimulating hormone as a test for thyroid deficiency and for treatment is unsuitable and misleading.

Thank you very much.

As you will be aware, the Scottish Government agreed to conduct a listening exercise, and in doing so commissioned Thyroid UK to conduct a patient survey. You expressed disappointment with the manner in which the Scottish Government approached the listening exercise and with its response to the survey. Do you have a view on how the listening exercise could have been conducted differently, and do you have any suggestions in that regard?

Lorraine Cleaver may have some suggestions.

My suggestion is the one that was mooted at the committee a few years ago, which is to have an inquiry run by the committee. The listening exercise was an exercise in wasting money, wasting time and achieving zero. I met with a Scottish Government minister shortly after the listening exercise was agreed on, and he discussed setting up a short in-house inquiry with medical people and patients suffering not only from thyroid disease but from fibromyalgia or ME, and running a long-term project over a year. Nothing happened with that. I know the budget that was set aside for that, but nothing came of it. The Thyroid UK survey was a very small part of the listening exercise; it was not the listening exercise itself. Nothing was done with the findings of the Thyroid UK survey; in fact, I think that they were roundly ignored by the minister who came here.

In more than four and a half years—indeed, almost five years—we have not achieved anything. We have passed things over to the Scottish Government or the Scottish intercollegiate guidelines network, and we have achieved absolutely nothing. The committee has to seriously consider carrying out an inquiry, because otherwise that will be five years of work for nothing.

A key issue that has come to light in the committee’s consideration of the petition relates to the evidence base for patient experience and clinical opinion. Do you consider that there are gaps in the existing research in that area and, if so, what gaps have you identified?

There is a rather stern answer to that. The alleged gaps in knowledge are in fact refusals to acknowledge that there is evidence that flies in the face of current actions. That is because the medical profession is by definition a conservative one and, having diagnosed and treated people in a particular way for 35 years, it does not take kindly to being told that it has been doing the wrong thing all that time.

It will take an enormous amount of pressure to bring the medical profession around to reading and understanding the papers—which I have to say are rather complicated—that show that what has been done over the past 35 years or so is suboptimal and has actually caused harm to patients. That is a very big thing for the medical profession to have to swallow but that is what, one day, it will have to do.

Sooner rather than later, I presume.

Yes.

We understand from the Scottish Government’s latest submission that the chief scientist office has a remit to fund clinical research that is led by a Scotland-based clinician or scientist and which has the potential to improve the health and wellbeing of the people of Scotland. Have you approached any Scottish researchers to make a funding application to the chief scientist office to address any gaps in clinical evidence that you have identified?

My great disadvantage is that I am not medically qualified. That means that I can be easily ignored because that can be raised against me immediately. I do not have those connections and nobody from the health service in Scotland has approached me. Indeed, nobody in the world has approached me to talk in any forum about the situation. The invitations on my mantelpiece number zero and look to continue to be zero for the time being.

I believe that it is up to the authorities to debate the situation with me and for me and the appropriate people to have a discussion based on current evidence about how to proceed further.

I want to ask about the importance of the doctor-patient relationship in identifying suitable treatment and implementing patient-centred care. Are patients sufficiently supported when they do not agree with the treatment plan that is proposed by their general practitioner or endocrinologist? Do you have any recommendations for what steps NHS Scotland could take to support patients who find themselves in such circumstances?

Gosh, have we got a day? From what I read about people’s experiences, my belief is that, in general, GPs are woefully ignorant about how to treat patients who have thyroid dysfunction. GPs seem to have become used to what I call computer thinking—they look into a blue screen where advice is given to them and they simply follow that advice in a rigid and mechanical fashion.

That means that, as I said, the biochemical numbers, which are displayed on that screen from the pathology laboratory, seem to become paramount over the appearance of the person in front of the GP. In my opinion, that is the great error that is being made—the patient is now subordinate to the chemistry, which is not right. It cannot be right, because the chemistry is the guide and not the dictator. However, I cannot lay the fault at the door of the general practitioners, because they only behave in the way that they are instructed to behave.

09:45  

I could go on for ages about this. The individual patient is an anecdote—they are in front of the GP and they have their unique parameters, which are within or without the normal range, depending on how they are. That is one thing. The normal ranges for health are obtained statistically. There is a tension between statistics and individuality. The individual is a place within those statistics, but to use the statistics backwards and say that an individual is within a range and is therefore okay, wherever they are, is a complete error.

I am saying that general practitioners are not given the proper method of discriminating the individual from the ranges that they are given within which to place that individual. The individuality is lost, and therefore misjudgments as to the success of the treatment are continually made.

I am afraid that that also applies to endocrinologists, who can be just as guilty of those errors as general practitioners. It is a matter of education, in my opinion.

Does that go back to clinical training?

Yes—clinical training has to change very much. There are an awful lot of misapprehensions about how to treat numbers and how to relate them to patient presentation.

In the 21st century NHS, medicine is going forwards, but for this patient group we are going backwards. We used to have desiccated pig thyroid, which had everything in it, but we cannot get that now. We are actually going backwards.

I will read you part of a paragraph of a news report about a paper by an American scientist that was published in October last year, because I find it astonishing that this is happening in the 21st century. It states:

“Better medications are needed to treat hypothyroidism, Bianco believes. Until that day, he urges physicians to change how they talk about hypothyroidism with patients. ‘Doctors should be telling their patients, ‘I’m going to normalize your TSH, but you’re going to be at a higher risk for gaining weight, experiencing depression and fatigue. It is also more likely that your cholesterol will go up.’ That is what we should be telling our patients.’”

Most of those patients will end up on statins and antidepressants. Doctors are saying to them, “I’m going to treat your TSH and reduce it until it is in a nice part of the range, but you are going to need statins, beta blockers, antidepressants and gosh knows how many other things.” That is outrageous in the 21st century.

They will do that rather than admit that what they are doing is wrong. They are medicating people with one drug that does not suit everyone, and they are medicating them to keep the TSH happy, rather than remove a person’s symptoms. It goes back to training and education. John Midgley was correct that it will take decades to unravel. The egos of the people who wrote the papers and decided on the protocols are not going to give up easily.

I have a supplementary question on the GP issue.

First, I will put on the record, given what Lorraine Cleaver said, that Dr Anthony Toft, who is an eminent Scottish endocrinologist, commented on the BBC recently on the cost of T3; maybe we can come on to that. He was asked whether desiccated thyroid hormone was likely to be used instead, and he said:

“I suspect that in time that’s what will happen.”

To me, that is tragic. The people who are not getting it now cannot wait. They will end up on depression medicine, they might be suffering from fibromyalgia and so on. Regarding what Lorraine Cleaver just said, it is horrendous that it is only going to happen “in time”. Many women will suffer in the meantime and many of them will not be economically active as a result of it.

The committee has my own story. Loads of money was spent on testing me for conditions from Lyme disease to Addison’s disease and everything in between and putting me through a brain scan—which must have cost a fortune—heart monitoring and so on. All through that process, I said to every doctor, “I’ve got an underactive thyroid. It’s got something to do with that.” After spending two years and a fortune on this, I finally got to Dr Toft, who tested my T3 and found that I was not converting. I came back to life with a small pill, but it took two years. I was determined—how many women out there are not that determined?

From the paper that I have—I do not have the committee’s private papers—it is clear that there will be no SIGN guidance, so we are back to where we started. The paper says:

“a good practice guide for general practice may be a more useful document”,

and I want to ask Lorraine Cleaver about that. However, I note that the paper also says that the GPs noted that they are

“not in a position to comment on unlicensed medication.”

They are talking about desiccated thyroid hormone, which they used to prescribe 35 years ago—and it was unlicensed then, too. They are not in a position to comment on such medication, but they can prescribe it; indeed, some do, but they do so under the radar, because they see what happened to the late Dr Gordon Skinner, who kept getting hauled up before his professional body even though he had done no harm to his patients and was, in fact, doing them good.

I cannot understand how GPs can say that they are

“not in a position to comment on unlicensed medication”,

and I want John Midgley and Lorraine Cleaver to comment on that. How can GPs say that?

The behaviour of the opinion formers in thyroid medicine is verging on disgraceful. They refuse to allow desiccated thyroid to be licensed or used in this country for the very strange reason that it does not have the right content of thyroid hormones that are appropriate for treatment. That makes me scratch my head, because if you give patients only thyroxine, which is the normal treatment, that is about as unphysiological a thing as you can do. Indeed, it is far more unphysiological than giving natural desiccated thyroid—as long as the content of that product is regulated and controlled, which I believe it is according to the pharmacopoeias.

There is no real evidence on this and no reason not to be quite liberal in the choice of treatments that can be offered to patients according to their requirements and their responses to the treatments. I cannot see why there should just be narrow tramlines of suggestions and recommendations, given the fact that individual physiology is so widely defined and so widely corrected when wrong. I simply cannot see any logic in this narrow behaviour.

Like Elaine Smith, I cannot quite get my head around the issue of desiccated thyroid hormone, which we know has been available in the past and has worked. For clarification, I note that Lorraine Cleaver said a minute or two ago that it was unavailable, but I believe that we have had evidence that it is available on the internet from abroad. I presume that people are still buying it from there.

I buy it from abroad, but I live with the fear that I will not be able to source it one day. It is licensed in America, but I am buying it via some company on the Pacific Ocean, which is ridiculous. The medical community removed my organ and told me, “We’ll put back what we took out”, but they are not doing it. They are leaving me and many thousands of other patients to buy it on the internet.

There is another problem with triiodothyronine—or T3—which I believe is being investigated by the Medicines and Healthcare products Regulatory Agency. The UK has one manufacturer of T3, and it seems to have a monopoly on price, which has gone from £54 for 28 tablets to £154. People’s medication is not supposed to be stopped because of cost, but that is what is happening. Elaine Smith has also been dealing with that.

I can see the position that the NHS is in. T3 costs £300-odd per month for some patients, but it costs one euro per pack in places such as Turkey. We are still in the EU—just about. Why can we not source cheaper T3 from there? Why is there only one manufacturer? Some patients have a tiny glimmer of hope that they can access T3 eventually, if their doctor prescribes it, but they are under constant threat of having it removed and that is happening.

Is the desiccated thyroid hormone available abroad at a reasonable price?

The price has increased somewhat, but it works out at about £50 per month for me, which is still cheaper than the T3 that the NHS is getting stitched up over. I do not grumble about paying that, and that is how most patients feel. They do not have a problem about paying for it, but they have a fear about accessing it.

Okay. Thank you.

I am conscious of the time. There are a lot of other questions that we could ask, but perhaps we could do so in writing. There is a very complicated set of issues involved, but I do not want to lose sight of the fact that we are right up against the clock. We could say that the question of licensing is not within the remit of the Parliament and is a question for elsewhere.

Do members have final questions that they want to ask?

I have a comment. Through my work on this committee, I found out that a male friend of mine has this issue and was having real problems with thyroxine—or T4—until the consultant endocrinologist prescribed T3. My friend says that the combination of the two has made a huge impact on his life. I know that that is anecdotal evidence, but I spoke to his consultant, who told me that half of the consultants believe one point of view and the other half believe the other, which is really unhelpful. Proper clinical research has still not been achieved. I do not know what the answer is, but somehow or other that circle has to be closed.

We should certainly flag up the research issue to the Scottish Government. It feels as though there is an awful lot more to be established around licensing, which is not within the committee’s power. However, we are also interested in people’s concern about the way in which they have been treated.

Does Dr Midgley think that clinicians have clear guidance on when to use different types of diagnostic tests?

No; I do not think that they are given guidance at all, at GP level. The dogma is always, “Take the thyroxine and normalise your TSH. Thank you, madam or sir. Go away; you are properly treated.” That is the end of it. If a patient feels ill, that is put down to something else, such as their being depressed or having a cold, but not to their having a thyroid problem. I am afraid that the ignorance on that is quite astounding.

One thing that I want to run over quickly is that the instruments that are used to measure the thyroid hormones from different manufacturers do not give the same answers. Therefore there is extra confusion, in which the normal range from one manufacturer can be up to 50 per cent different from the normal range from another. The confusion can be astounding and, in the case of T3, it is awful. The standard of measurement is as bad as the standard of diagnosis. How we get on, I do not know.

Licensing is a slight red herring, because GPs can prescribe desiccated thyroid hormone if they want to. When T3 ran out a few years ago, when the committee was dealing with the issue, GPs could not get it and were then told to get it from abroad, from wherever they could. Licensing aside, GPs could still get it, but they are frightened to prescribe it because they are being hauled in front of their professional bodies for doing so.

As I said, there may be points that we want to pursue at a later stage, but I am conscious of time this morning. I thank the witnesses for their attendance.

We want to produce a revised draft report. We should reflect on the evidence that we have heard today and any follow-up questions that we may have before we complete that report. Is there anything else that members think we should do?

10:00  

This is such a big issue and it is a shame that we have had to round off our discussion. I do not expect the witnesses to answer this, as we have run out of time, but I would be interested to know what their priority would be to improve the situation. I know that there is a list of things—perhaps they could be explored in a letter.

We should roll back everything—all the problems that we have about the tests and the medicine being inadequate—and go right back to the source of the guidance that is handed out to GPs, which is why we are in this position. The guidelines were written based on consensus, and that consensus medicine is not science. We should go back to the source and ask why it is acceptable for guidance on such a common illness to be based on consensus rather than on good-quality evidence. We are firefighting and the problem is way back at the source.

I am reading that the guidance is from the National Institute for Health and Care Excellence, but surely the Scottish Medical Council has jurisdiction here, not NICE.

That can be clarified. I think that we are dealing with SIGN guidance, but we can get that clarified.

Given that all this time has passed and we are back at stage 1 on the guidance, and given that, as it says in the committee’s papers, GPs will not take on board good practice guidance, is there no possibility that the committee could hold an inquiry into the issue? All that happened in the beginning was a round table, which provided more questions than answers, and the petitioner has been before the committee a few times. However, this is a new committee and only one member has experience of the stories that were put together in a hurry. Is there any time in your timetable for an inquiry?

Obviously we have reflected on our business programme for next year, as all committees do. I am keen to finish our revised draft report, and we can draw conclusions from that. Although not all committee members were on the predecessor committee, we have read and reflected on the evidence. We have to balance the interests of the petition with all the other pressures that we are under. You can rest assured that we will at least be looking at it.

I thank the witnesses again for their attendance.

10:02 Meeting suspended.  

10:04 On resuming—