The next item of business is a members’ business debate on motion S4M-09251, in the name of George Adam, on multiple sclerosis week 2014—treat me right. The debate will be concluded without any question being put.
Motion debated,
That the Parliament welcomes MS Week 2014, which takes place from 28 April to 2 May; understands that Scotland has one of the highest incidences of MS in the world and that over the last decade the availability of treatments for MS has been instrumental in supporting many people to manage their condition and its symptoms; supports the notion that everyone with MS should be able to access the right treatment at the right time; notes recent research by the MS Society that highlights current barriers to accessing MS treatments in Scotland and considers that, with new treatments on the near horizon, this situation will hopefully be urgently addressed; welcomes the MS Society’s Treat Me Right campaign, which aims to ensure that licensed treatments for MS are freely available to everyone who needs them and that people with MS are active, informed and equal partners in their care, and notes debate on what steps must be taken in Scotland to achieve this goal with the partnership of the Scottish Government, the NHS, the voluntary sector, industry and people affected by MS.
I call George Adam to open the debate. [Interruption.] Could we please have silence in the public gallery?
12:35
Thank you, Presiding Officer. The noise in the public gallery is probably just my family getting overexcited at the thought of me debating here today.
Most members will know that my connection with multiple sclerosis is through my wife Stacey, who, as members can see, is up in the public gallery. It is almost like “Romeo and Juliet”, with her up there on the balcony—and, yes, we are that romantic with each other. When Stacey was diagnosed at 16, that was a life-changing experience for her. Nobody knew about MS and she had to see general practitioners and consultants, so everything was difficult. Her family instantly went into a panic and did not understand what MS was. Her father, Tom, just thought, “Oh, now we know it’s MS.” It was only when her mother explained to him the life-changing aspect of MS that he understood and just broke down.
However, Stacey went on to university and, obviously, she eventually met the love of her life, so things got a lot better. Stacey is very positive about her MS, as is just about everybody I know who has it. I do not think that I have met one individual with MS who complains or moans about their situation. They want to be part of everything and to get on with stuff.
I apologise to my MSP colleagues for Stacey being the MS Society badge police for the past week. She has made sure that just about everyone has worn the badge. In fact, Rebecca Duff from the MS Society Scotland said, “I’m just glad she’s on our side, because I wouldn’t like to be on the other side.” That is how passionate Stacey is about making sure that we get the message out there. Sometimes, MS is not as high up the agenda as it should be.
Here we are in year 3 of Stacey’s annual MS awareness week debate. At the MS Society event in the Parliament last night, I talked to many families who are dealing with MS. My family has come here, too—they almost treat it as a busman’s holiday when they come over to see the debate.
My mother-in-law does this thing where she says, “You know, if someone stopped me in Paisley High Street about”—insert whatever subject—“I would say this.” That normally means that I have to listen, as she is trying to influence my opinion on various things that are happening in the world. She has said that a few times. When we discussed MS, we said that some of the problems for families who deal with MS are the shock, feeling alone and the ignorance of not knowing what MS is. Things have changed quite a bit and are moving forward, but those are still issues for many families.
Since last year, things have moved on quite a bit, with the creation of the cross-party group in the Scottish Parliament on MS. I see that my deputy convener on the group, Lewis Macdonald, is in the chamber. In creating an agenda, we ensured that we focused on what we can achieve, so that we have a work programme that can deliver something. We want to ensure that we do not just sit every quarter talking—in effect, moaning—about things not happening. That has been because the MS Society, partner organisations and other people who are involved with MS and who want to make a difference have got involved with the Government and the Parliament. That is the big difference for us.
Yesterday, Neil Findlay made the important point to me that many MSPs have a family member who has MS. That is an example or representation of what we are dealing with in Scotland.
At the first meeting of the cross-party group we started talking about access to medicines, which is currently a big, big issue. We need the pharmaceutical companies, the Scottish Government, partner organisations and the national health service to work together to deliver access. The MS Society said in its report, “A lottery of treatment and care: MS services across Scotland and the UK”, which was published last year:
“Only 36 per cent of people living with MS in Scotland who are eligible take medicines that alter the course of MS.”
It went on to say:
“29 per cent of people in Scotland told us they do not have enough information about medicines.”
That brings me to the people and families who deal with MS on a daily basis. The MS Society in Scotland decided to gather evidence on what its membership and people in Scotland are doing. It went to Inverness, Airdrie, Edinburgh, Hamilton, Aberdeenshire and Dunfermline to speak to people, and it found that the big issue is access to the drugs that people need. One woman said that she had been on—excuse my pronunciation—Tysabri for five years and it had made a huge difference to her. She said, “Although the treatment clinic I go to is quite a distance away, I see my MS specialist regularly, but this is partly because of the treatment I’m on—there might be side effects.”
Another woman said, “When planning my life and business, I don’t need to worry about fridges for my syringes because now I’m on Gilenya, which is a tablet.” She said that she could just keep the drug in her handbag. She has access to dedicated staff, but she said that she worried about whether other individuals had similar access.
I will mention a wee wifie from Paisley who I speak to on the High Street, Rosemary Thompson—she is Stacey’s mum, incidentally. She says that it is important that people with MS get more support and more access to MS professionals from an early stage. She also thinks that GPs should be better informed. We constantly hear from people with MS that their GPs do not have the full information.
Therapy centres such as the Revive MS Support centre, in Glasgow, offer the best support. Often, what is needed is someone to listen and talk to people and the opportunity to get further information.
We have been lucky. Stacey had a problem with her mobility but got physiotherapy only after she had a fall—at that point, after having had MS for 20 years, she was taught how to walk with crutches. That kind of support should be happening at an earlier stage.
Elizabeth Quigley talked last night about how she wants progress on access to drugs. There is a two-way street: the drugs companies must make applications to the Scottish Medicines Consortium if we are to be able to get the drugs. Fampyra has been licensed since 2012 and Sativex since 2010, but nothing has been done with those drugs yet.
We have to ensure that those drugs are available, because they can make a difference in people’s lives. At last week’s meeting of the cross-party group, Stacey said, “It’s like someone showing you a new designer house but not giving you the keys—you just look at it for five years.” She also said that not giving access to the drugs is “evil”.
That is an important point, because in Scotland we have more MS sufferers per head of population than anywhere else does. It is a very Scottish disease. We say that 11,000 people in Scotland are dealing with MS, but we do not know for sure. I ask the cabinet secretary to look at extending reporting for the Scottish MS register, which was launched in 2010. Currently, only people who are newly diagnosed with multiple sclerosis are registered. We need to expand the register so that everyone in Scotland who has MS is on it. Only when we know exactly how many people there are and where they are can we plan for prescribing and treatment.
Only when we start to do the things that I have talked about will we start to treat people with MS right.
Thank you. We will have speeches of four minutes, and I will be grateful if members stick to their times, because the debate is heavily subscribed.
12:44
Thank you, Presiding Officer, and I apologise, because I will have to leave after making my speech.
I thank George Adam for lodging the motion and for his work on getting the cross-party group on MS established. I also thank the MS Society for its proactive work programme for the group.
I do not want to go over the grim statistics on MS in Scotland, because they have been covered time and again in our annual debates on the issue. I want to focus on the impact of the illness and the reality for sufferers. One of the things that concerns me most about the treatment of MS in Scotland is unequal access. Only 36 per cent of sufferers have access to drugs that alter the course of MS, 25 per cent are unable to see a neurologist when they need to, and six out of 10 eligible people are not taking disease-modifying drugs.
Many sufferers are struggling financially with care costs; only a quarter of sufferers are in work. Many, like my brother, have had to stop working because they cannot physically continue with it. There is unequal access to specialist nurses, emotional support, physiotherapy, continence advisers and so on. Last night, I spoke to the only MS social worker in Scotland—Duane Patterson, who works in Dundee—and surprise, surprise, it is the poorest and most disadvantaged who suffer most and who are denied access to services.
Recently, I had to watch a friend of mine who experienced excruciating nerve pain for several months. It attacked his face, mouth and tongue, and impacted on his ability to speak. It destroyed his quality of life by causing him to become housebound and to lose weight, and it affected his social life. He found himself left to his own devices for all that time and got very little support, and he did not want to ask for any. I also had to deal with a constituent who has severe mobility problems and required a home visit from his dentist to carry out a denture repair, but no appointment could be made for a whole month. We should think about how that made him feel.
However, I hear about other areas in which people have direct access to specialist nurses, phone numbers so that they can contact someone directly for advice and support at any time, and access to other services to help them to manage their condition.
This week, the MS Society is highlighting the further inequality in access to medicines and licensed drugs. The Scottish Government often compares Scotland with other countries, but we would not be so keen to make that comparison in this area. Scotland is 25th out of 27 in Europe, with almost half the rate of access compared with that in Northern Ireland.
People who have been diagnosed are supposed to see a specialist once every 12 months as a minimum, but for many that is still a significant issue. When they see a specialist, the information on treatment and new developments becomes a big secret. Elizabeth Quigley spoke very eloquently about that last night.
In my area, we have an ability centre in Livingston that has the West Lothian community rehabilitation and brain injury service. It provides community-based specialist assessment and rehabilitation for people who are over the age of 16 and who have either a physical disability or an acquired brain injury, and it includes MS in its work. It provides help with daily living, mobility, communication, emotional support, social activity and so on. However, despite that service being available locally in my community, GPs still do not refer people to it. Why is that? Why is something as simple as a referral to a support service not being made? My brother has never been referred to that service. The person whom I spoke about earlier who had the excruciating nerve pain has never been referred to that service.
Last night, the minister made some very positive statements, which are very welcome. I hope that those words result in action. I am sure that all in the cross-party group on MS will be saying to the minister that we are watching.
12:48
I thank George Adam for bringing this members’ debate to the chamber.
I will make a brief contribution. I am lucky, in that my connection with MS is not through a family member. Many people whom I have met over the years have had a family member who has had to suffer MS and find a way of living positively with it. That is really important.
George Adam referred to an organisation in my constituency called Revive MS Support. It was based down the road from my house and lots of my constituents worked there, so I went along—as MSPs do—and I was absolutely blown away by what people were doing there. The first thing they told me was that the organisation is not just for talking about what is wrong with people. It exists to provide people who have MS, and their family members, with a place to hang out. It is there to help if someone wants aromatherapy, a massage, access to an MS specialist or whatever. It takes a holistic approach to those who live with, and those who have relatives who live with, MS.
What that organisation does is quite spectacular. It provides a series of outreach services across the west of Scotland. I wrote to the Cabinet Secretary for Health and Wellbeing recently about Revive MS Support, because such is its success that it has outgrown its Maryhill base. It is looking to colocate beside the Southern general hospital; it hopes to buy a property there. I was at its fundraising launch dinner, so I know that it hopes to raise £850,000 to enable it to do that.
My colleague George Adam has written to John Swinney about how we can sustain such excellent third sector organisations. I have written to Mr Neil about that, too. Revive MS Support tells me that it is confident that it can get many trusts and charitable organisations to donate to its campaign to raise £850,000 to develop an excellent new centre. It also tells me that any Scottish Government money—even a small amount—would be hugely powerful in leveraging in additional moneys from elsewhere.
I will leave my comments about Revive MS Support there. I would have done the organisation and my constituents a disservice if I had not mentioned it during the debate. I hope that the cabinet secretary will agree to meet George Adam and me to work out how we can take things forward.
The other thing that I want to talk about is access to medicines and treatments. As deputy convener of the Health and Sport Committee, I am incredibly proud of the cross-party approach that we took to the issue of access to new medicines in Scotland. Our committee got our teeth into that issue and it ceased to be a case of tabloid newspapers reporting which part of the UK could get one medicine and which part of the UK could not. We just looked at improving the system to make it work for the people of Scotland. That is kicking in now; it will work for the people of Scotland.
However, I am concerned that there could be pharmaceutical companies out there that, although they have life-enhancing drugs for those who are living with MS, are not for whatever reason making applications to the Scottish Medicines Consortium. I know that the SMC is world class at carrying out scoping exercises to identify drugs that could be of benefit to the people of Scotland and encouraging companies to deliver the evidence required to have those drugs approved by the SMC. However, I understand that two companies have not done that. I would welcome anything that the cabinet secretary can do in relation to those companies and the SMC in order to encourage submissions to be brought forward. I believe that we now have a first-class system in Scotland, but it can work only if the pharmaceutical companies bring forward their medicines for consideration.
I said that I would be brief, but I have gone over my time. I apologise for that, Presiding Officer. I hope that the cabinet secretary will take those points on board for his summing-up speech.
12:53
I, too, congratulate George Adam on securing the debate. In fact, more than that, I congratulate him on becoming a champion for this issue in the Scottish Parliament. Having a champion for such issues brings an added dimension and impetus, which I hope will lead to the very progress that the debate is designed to achieve.
George Adam began by saying that this was a Romeo and Juliet occasion, with his wife Stacey perched on the balcony, so we will check the wall afterwards for messages of endearment having been posted, as is the custom and habit.
The problem that we have is that multiple sclerosis is a condition about which everyone is really aware. Most people on the street when asked would say, “MS—oh yes, that is multiple sclerosis”; it is one of those conditions. However, what I and others have perhaps totally underestimated or made unfounded assumptions about is the quality of the treatment that is available for people who suffer from multiple sclerosis. What is becoming apparent is that, in a number of ways, that treatment is deficient. It is certainly deficient given the standard that some lesser-known conditions have achieved through focused promotion of that particular agenda.
The reality is depressingly and unacceptably different. It might be matched—as I was pleased to hear—by the positivity of sufferers who are determined to make the very most of and achieve the potential of the life that they have, but none of us can be happy that Scotland languishes nearly next to the bottom in a league of international countries in terms of the availability and success of treatment.
There are a number of issues at hand. First, there is the poor dissemination of information about the disease and, secondly, the restricted quality of the service. A number of members have cited access to medicines—especially the symptomatic medicines—as an issue, and George Adam went through the list of drugs in question. A number of medicines that are licensed are not being prescribed, and a number of medicines exist for which licences are not being sought.
It is slightly unfortunate and ironic that, by focusing so much on cancer drugs in discussing access to new medicines in the past three or four years, we have to some extent undermined, undervalued and overlooked many other conditions. Access to and prescribing of medicines for MS can make a qualitative improvement in treatment now for a disease for which people have been seeking qualitative improvements in treatment for generations. The services are there but—to return to the “designer house” comment that we heard earlier—those who need them are not being given access to them.
Another issue is the provision of access on a proactive basis to regular consultant services. That should not be something that people do not realise they are entitled to, but a service to which they are routinely offered access, and I hope that we will get that improvement.
I welcome the Government’s announcement last night of further enhancement of the services on offer. However, we should also do more to advertise to all those who are sufferers—a group that we believe numbers approximately 11,000 in Scotland—the various treatments that are available. The national register would be a prerequisite in that regard.
I was at the Standards, Procedures and Public Appointments Committee when it approved the establishment of the cross-party group on multiple sclerosis. Like many members, I sometimes wonder whether we do not have just that few too many cross-party groups in the Parliament. However, what impressed those of us who were present at that committee meeting was George Adam’s underlying commitment to ensuring that the cross-party group would have a direct focus. That focus is producing an agenda that will, we hope, translate into results.
I am sorry that I was unable to be at the function last night—no slight was intended at all. I, like other members, know people who have suffered or suffer from the condition, and the campaign has my support. The focus on the treat me right campaign will enjoy the support of my party, and I wish George Adam and the cross-party group every success in working with the cabinet secretary and the Government to make the progress that we all wish to see.
12:57
I congratulate George Adam on bringing the debate to the chamber and for being, as Jackson Carlaw said, a champion of MS issues in the Parliament. I certainly do not have any great experience or expertise in the area, although I am, like Bob Doris, pleased that there is a great voluntary organisation, in the form of the MS therapy centre, based in my constituency. I thank all the members who supported my recent motion on the centre, in which I praised its support services and the innovative therapies that it offers to people with MS in Edinburgh and the Lothians and the dedicated and diligent care of the centre’s staff and volunteers.
The voluntary sector is important in dealing with MS, and we have been privileged to have representatives of the MS Society in the Parliament this week. We have been able to talk to them and to read the various materials that they have presented. They told us in particular about the society’s treat me right campaign, and I was interested to read the research that lay behind the campaign and the recommendations—or perhaps I should say the demands—that the campaign makes.
Two pieces of information from the research were particularly interesting. One, which was UK wide, was that
“Six out of 10 ... people”
with relapsing MS
“are not taking medicines which can alter the course of the condition.”
That probably corresponds with the 36 per cent of people in Scotland who are, according to the research, getting the drugs that would benefit them.
The other very interesting piece of information from the research is that people who feel informed about the medicines and who say, crucially, that they have regular access to an MS specialist are far more likely to be in treatment. The contrast is astonishing: 69 per cent of those people and only 7 per cent of other people, which highlights the importance of the issue.
The research led to the treat me right campaign’s four recommendations. The first is that all licensed treatment should be approved and available. On this occasion, it is not the SMC that is being criticised, which is great to know; in some cases, it is the pharmaceutical companies that have not put forward their drugs for approval by the SMC. The SMC should in fact be praised, because it has recently approved two new drugs.
Crucially, the report goes on to say that people with relapsing MS should be informed about the options and should discuss them with a specialist. That is recommendation 3, which is related to recommendation 2: that everyone should be invited to a regular review by an MS specialist. That is a key issue. Again, I give credit to the Government for having the neurological standards, one of which is to invite patients to a review with a specialist every 12 months. However, we know that that is not happening in every case. The 2012 report “Neurological health service in Scotland” said that a quarter of people were not able to see a neurologist when they required to do so. That is clearly an area that needs some attention.
There is a related recommendation about having access to a multidisciplinary team. Nurse specialists for MS are particularly important in that regard. Again, only about half of affected people have such access, so there is clearly more to do, but I give credit to the Government for having the standards and the group that is overseeing their implementation.
I thought that the last recommendation in the report was equally important, because it states that all people with MS should be supported to be equal partners in decision making about their treatment. That is obviously an important general principle for the health service and is linked to patient participation and the patient groups that support them.
When talking to the MS Society today, I was interested to note that it emphasised the importance of not just the society but the Neurological Alliance, of which the society is a member. The MS Society said that many of the issues affect a range of neurological services, so it is clearly important that the Neurological Alliance and the neurological voices project that it has spawned receive support from the Scottish Government.
Before I call Jim Hume, I advise Parliament that due to the number of members who still wish to speak in the debate, I am minded to accept from George Adam a motion without notice under rule 8.14.3 to extend the debate by up to 30 minutes.
Motion moved,
That, under Rule 8.14.3, the debate be extended by up to 30 minutes.—[George Adam.]
Motion agreed to.
13:01
I, too, start by congratulating George Adam on securing this debate in MS week. I also congratulate him on taking as long as two minutes into his speech to mention Paisley, which I think is a record. He did manage to get Paisley into his speech twice, however, so well done on that.
It is true that Scotland has one of the highest incidences of MS in the world. Sadly, it remains unclear why that should be the case. Diet, genetics, environment or a combination of those might be the reason. I speak in this debate from a heartfelt perspective. At the end of the previous parliamentary session, there were concerns that the Leuchie house MS respite centre in my region might close because of lack of funding. The users and their families, who need the vital respite care that it provides, come from across Scotland, north England and even from the continent, and they faced losing an invaluable service. lain Gray, Jackie Baillie and I all supported the campaign for Leuchie house—Jackie Baillie hosted a members’ business debate on the issue. I am glad that the cross-party campaigning in support of the work of Mairi O’Keefe and her team at Leuchie house ended with the centre being saved, which is to the benefit of people with MS and other conditions.
MS sufferers need not just respite but treatment, however. Concerns have been raised about the treatment of sufferers by different health boards. I share the view that health boards need to keep data about treatments given by their various health professionals and the time taken for people to get treatment. From that data we can see where we might need to target improvements so that no MS sufferer in Scotland is at a disadvantage just because of where they live. Once we have that data, we can share best practice across health board regions and look to improve care for people with MS. If that does not work, then perhaps we should look at health improvement, efficiency, access to services and treatment—HEAT—targets for the treatments offered and waiting times to treatment.
Those ideas were discussed at the recently formed CPG on MS, of which I am glad to be a member. At the CPG, we also shared concerns about follow-up doctor appointments after a patient is diagnosed with MS. We heard that often when a doctor diagnoses someone with MS, no recommendation is made for initial treatment because the patient is in the early stages. The patient can then go home and, because MS can get worse slowly, realise several years down the line that they have missed out on new treatments or early intervention. Therefore, it is vital that GP practices have in place a best-practice system that ensures that, at a set time, MS patients are invited back in for a review to see whether the condition has progressed.
At the CPG, there was frustration that many innovative new drugs are not available to sufferers, although we heard from the industry that due process and testing of the drugs was finished. It is, I suppose, a chicken-and-egg situation: we cannot freely license drugs without some due process. There are horror stories from the past, when due process was not enough.
I would like it if people with MS, wherever they are in Scotland, were informed of all the options available to them, whether through drugs or therapy centres such as the excellent example just a mile from here that Malcolm Chisholm mentioned, the MS therapy centre Lothian. At the therapy centre, Nancy Campbell and her team help not just people from the Lothians; people from Fife and the Borders also use that great centre.
We must ensure that there is not a postcode lottery. Diagnosis and treatment must be carried out timeously, with regular reviews of patient progress. I look forward to working with the CPG on MS and the MS Society on those matters in future. Given the prevalence of MS in Scotland, I look for assurances today from the cabinet secretary that the disease will be treated with urgency, as its sufferers deserve.
13:05
I, too, congratulate George Adam, and I echo members who have complimented him on the work that he does. I also compliment the cross-party group on its work, and acknowledge the excellent information that has been made available to us during MS week. Last night’s successful reception had excellent attendance.
I do not often speak in health debates and I am not on the Health and Sport Committee. I am by no means an expert in this area. I am lucky, though, in that, throughout my working life, I have been able to seek expert advice from my big sister. Whether as an information technology professional dealing with GP fundholding systems or on health-related issues, I have always sought my big sister’s support.
My older sister Eileen has been a GP in England for more than 30 years and is a fellow of the Royal College of General Practitioners. As well as her GP duties, she trains and examines GPs on behalf of the college. However, in seeking her help for this debate, I was also asking for her experience as an MS sufferer of more than 30 years.
Despite being part of the medical profession, and an English patient, my sister’s experience echoes much of the testimony from the MS Society about a lack of coherence and there being no golden pathway through diagnosis and support for MS sufferers. Because of the nature of the disease, sufferers see different consultants as the disease progresses, which makes it difficult to build the rapport that would enable someone to talk through the options and possibilities as they move forward with the disease.
I was delighted to learn so much at last night’s event. In the debate this afternoon, many members have talked about the symptoms of MS, and Neil Findlay made a powerful speech about that. We should highlight to people who might not understand the disease as much as those who live with it, and their families, friends and carers, that MS drugs are extremely powerful. When we talk about disease-modifying drugs, we perhaps do not talk about the effects that the treatment itself can have on MS sufferers. It was not until my sister described her treatment as being like chemotherapy that it struck me how powerful the drugs can be. The word “chemotherapy” brings that home to us because chemotherapy is normally associated with cancer treatment. My sister and many other sufferers have to make a choice every day to take a treatment that they know will make them feel awful in the short term for what might not be a guaranteed long-term gain.
I was particularly interested to learn last night about the tablet forms of DMDs, because my sister’s experience is of injections, with all the associated problems that have been mentioned to do with travel and the need for fridges—things that we might not associate with the disease.
My sister is very lucky: she is still working and the other day she attended a Pilates class for people with various types of disease that benefit from that sort of therapy. She asked people at the class what they would want me to say today about their experience of being sufferers. She told me that it is all about getting everything right, not just the medicine; it is about all the support services that members have discussed today and people with MS having the confidence to know that they are making the right decisions about their options, in conjunction with their medical practitioners.
The treat me right campaign is fantastic and will take the debate forward. I thank everyone who has been involved in the process leading to this week and I look forward to the cabinet secretary’s response.
13:10
I, too, congratulate George Adam and thank him for his work throughout the year. Likewise, I thank the MS Society and the various MS therapy and treatment centres around the country.
I want to give the example of a constituent. I hope that I will not say anything that could remotely identify the individual, but her case graphically illustrates some of the issues.
In May last year, I was approached by a young woman who was the mother of a pre-school child. She had been prescribed Fampridine by her neurologist, as she suffers a lack of mobility and the drug would help with walking speed. The pharmacy refused to supply the medication, but she was told that she could self-fund at a cost of £250 per month.
She was aware that Fampridine did not have SMC approval and, like many MS sufferers, she was very well informed, so she appealed the decision. The notes that Linda, who works in my office, took said:
“Upset—knows the drug may not make her quality of life better but feels she could be given chance.”
At that point, the treat me right approach would have been highly appropriate.
At the end of June, the appeal had still not gone through, but the young woman got in touch to tell me that she was in the third week of a four-week trial that she had started. The cabinet secretary alluded to that in a letter to me and quite rightly said that it was a “private arrangement”. The young woman said:
“I have had really positive results. This is great but I am preparing myself for having to not take it as I can’t afford it and until pharmacy approves funding I will not be able to stay on it.”
She was offered face-to-face meetings with various people, but she declined them because she did not have the necessary mobility to get to them and asked for information in writing. I wrote a letter in support of the appeal, in which I suggested that wider aspects should be considered—I will come to them later. On 16 August, the appeal failed.
Further representations were made. I wrote to the individual patient treatment request co-ordinator about procedural issues and I wrote to the cabinet secretary with some general questions about drugs and treatment, to which I got a comprehensive response. I wrote to the company Biogen, which told me that it hoped to have data available at some point in the future. I would be very keen to get its paperwork for Fampridine.
Moving on—and missing out a lot of trauma in between—on 19 December I got a lovely email that said:
“Last night is the first good night of sleep I have had in months! Great news to get before Xmas and the New Year”.
Those months were months of anguish.
The private arrangement is called a responder identification scheme, but I do not think that people are interested in what it is called. It might be considered a prescription. We use a lot of phrases and buzzwords in the chamber, such as GIRFEC—for getting it right for every child—and we talk about integration of health and social care and holistic approaches. I am not suggesting for one minute that the young woman’s child was not brilliantly looked after by two loving parents—quite the opposite—but prescribing such drugs can have a positive impact on not only the child but the rest of the family. We also talk about preventative spend, which, considered in the broadest sense, is terribly important.
Prescriptions have been referred to and I agree with the term “a tax on the sick”. As I have said, there are the finer points of debate, but people are not really bothered about procedures; they want to be treated properly.
Like many others, I took a lot of reassurance from what the Minister for Public Health said last night. At the reception was Dr Michael Foxley, a former council colleague who is very involved. He echoed what a lot of people have said, which is that MS sufferers have a lot of positive attitude.
We heard a positive attitude from the minister last night. There is progress, and I can tell you that the woman continues to do very well. I hope that that example can be followed elsewhere.
Thanks again to George Adam for bringing the debate.
13:14
I, too, congratulate George Adam on securing this debate and thank him for his proactive role in setting up our cross-party group.
Multiple sclerosis impacts on thousands of people across Scotland, but nowhere more so than in the north-east and the northern isles. The proportion of people with MS in Aberdeen is 20 per cent higher than the Scottish average, while the proportion in Orkney is more than double. Given that Grampian shares certain health services with Orkney and Shetland, NHS Grampian has a particular responsibility to give a lead in supporting people with MS, and in many ways it does that job well. Indeed, Marsali Craig, a trustee of the MS Society who attended yesterday evening’s reception, often says, “If you're going to have MS, Aberdeen is not a bad place to have it.” That not only says quite a lot about Marsali’s positive outlook and, as others have pointed out, the positive outlook of many other people with MS, but reflects the good access to services and excellent support from staff that many people in Grampian experience.
Critical to that is the continuing provision of good-quality neurological services at Aberdeen royal infirmary, which must not be compromised by any temptation to centralise services in the central belt. Also critical is the outstanding service provided by MS nurses in Grampian. Any temptation to cut costs there would be self-defeating, as support from those nurses is not only clinical good practice but cost effective in reducing the need for hospital admissions.
Although the Horizons rehabilitation centre in Aberdeen provides a very valuable service for people with a range of neurological conditions, it is only for people recovering from relapses, and increasing access to that service would again be cost effective, as good physiotherapy support can help people to maintain mobility and manage their symptoms. Of course, the Stuart resource centre, which is funded by the MS Society in Aberdeen, also provides invaluable support that deserves to continue.
Aberdeen is not a bad place to have MS in some respects—but not in all. Although it is true that NHS Grampian was ahead of the game in prescribing beta interferon for MS patients from an early stage, access to treatments has more recently become less readily available.
Anne Ferguson from Tough in Aberdeenshire can vouch for that. Five years ago, her consultant at ARI recommended that she have access to the drug Sativex to deal with the involuntary spasms that, for her, are the most significant symptom of her MS. In the absence of approval by the Scottish Medicines Consortium, an individual patient treatment request was made to NHS Grampian on her behalf. When it was refused, an appeal was lodged, but that, too, was unsuccessful. Three years ago, Anne’s GP wrote her a private prescription for Sativex, but, again, NHS Grampian instructed him that the drug was not suitable for prescribing in its area. Yesterday, a constituent told me about similar difficulties in obtaining a prescription for Fampridine, either in Aberdeen or in Glasgow, even though he is a health service professional and was willing to pay for the drug himself.
Such access to treatment issues are national, not local. Indeed, as we have heard, people with MS have better access in all but two European Union member states. Ultimately, these issues are for ministers to resolve, which is why it was good to hear the Minister for Public Health, Michael Matheson, pledge on the record yesterday evening that people with MS should receive the right treatment at the right time. That will require early and positive actions by the manufacturers as well as early and positive decisions by the SMC, for which, of course, ministers are responsible.
My constituents and thousands of others, including members across the chamber, will look to all concerned for rapid progress on these issues, and I look forward to hearing from the Cabinet Secretary for Health and Wellbeing how his Government intends to carry out the promise that was made last night.
13:18
As everyone else has done, I thank George Adam—and, indeed, Stacey Adam—for bringing the debate to the chamber.
It has been a very informative week. The stall and last night’s event taught me a lot of things that I did not know about MS. For that, I thank everyone involved. My colleague Bob Doris has already described in great detail Revive MS Support’s work, so I will not dwell too much on that. All I will say is that I have been fortunate to see some of the work that is carried out by the branch in my constituency, which meets every Friday in Cathcart Trinity church.
A few months ago, I was reminded of how much of a lifeline local Revive MS Support groups are for many people with MS across the south of Glasgow when I met an old friend of mine whom I had not seen in ages. The guy looked great; as I had expected, he was still fit and healthy. He was a great footballer—and I mean “great”. He was classy and energetic, and he played into his 30s and, I believe, his 40s. Members can imagine my surprise when he told me that he had heard of my visit to the organisation because he suffers from MS and is a member. That brought home to me just how little I knew about MS, who it affects, why it affects them and what we can do to make life easier for those who suffer from it.
Access to drugs and so on has been dealt with by others; time is getting on, so I will not deal with that further.
Colleagues might remember that, last September, I secured a members’ business debate on a report by the independent living in Scotland project on widening access to politics. During that debate, I spoke of my desire for Parliament to implement some kind of programme for people with disabilities. I wrote to the Presiding Officer and, due to the support and guidance that I received from her, we have managed to bring about a parliamentary internship programme for people with disabilities. It is funded by the Scottish Government through the Scottish Council for Voluntary Organisations and Inclusion Scotland, ably supported in Parliament by our fantastic equalities team. That is important because, when I suggested the idea of an internship, it was because I firmly believe that we make better decisions as a Parliament if we have many voices and experiences articulated in the chamber and by the people we meet in our role as MSPs.
Inclusion Scotland has secured funding from the Scottish Government for another six interns over the course of the next 10 to 12 months, and we are having an event in Parliament at the end of this month to discuss the internship and how members can get involved. I will discuss the matter in greater detail then, but I am sure that there will be plenty of interest from my colleagues across the chamber in participating in the programme.
I have brought up the issue because the programme’s first intern, Catriona Johnson, has recently been appointed and will begin work in my office in the next couple of weeks. Catriona had to go through a rigorous selection process against some formidable candidates, and she won through because she deserved to. Catriona has MS. Many of you will have met her, as she has been one of the people on the MS stall in the garden lobby this week and was at the event last night. I have now had the good fortune to meet her on a few occasions and it is clear that Catriona, like many others suffering from MS, will not be defined by her condition or let it curtail her ambitions. I have no doubt that she will bring a great deal to my office and will be a great role model for interns who follow in her footsteps. We are both looking forward to this internship starting. It will help Catriona to get a sense of what Parliament is like and it will help me to try to grasp some of the everyday problems that someone with MS might have to deal with.
One of the important roles in the programme is for interns to undertake a project, and I will discuss with Catriona the idea of examining in greater detail the reasons why manufacturers are reluctant to put the drugs out to review by the SMC, and what impact decisions like that have on those who suffer from the condition. We will pass the information on to the cabinet secretary when the project is finished.
I fully support the aims of the treat me right campaign, and it is clear that there is broad support across the chamber to move forward with it to try to get the answers that will ensure that folk with MS across the country are afforded the quality of care that they deserve, and that they can access it.
13:22
James Dornan thanked George and Stacey. I, too, would like to thank them, because Stacey’s influence in this matter is well known. I think that this debate is very appropriate. Unfortunately I could not make the reception last night because I was travelling back from Brussels, but I believe that it was successful.
I would also like to congratulate the MS Society. It deserves enormous credit for the contribution that it makes to improving the lives of people with MS, and it continues to play vital roles in promoting new research and in raising awareness of the condition.
I will try in my speech to answer some of the specifics points that have been made. First, I say to Jim Hume that we have now provided three-year funding for Leuchie house, which I am sure he will welcome. To Bob Doris—although he is no longer here—I confirm that either Michael or I would be happy to meet the Revive MS group. I met it last year, and we have supported it with just over £21,000 of funding. I am more than happy to meet the group again.
I will try to answer the points that were made about medicines and the register as I go through my notes.
Access to treatment has been highlighted as a major issue. The MS Society’s treat me right campaign for appropriate treatments is especially important. It emphasises the need for disease-modifying drugs for people with relapsing and remitting MS, which can help them to manage relapses and their impacts; and for symptom-management treatments for people with either relapsing or progressive MS, which can help them to manage some of the symptoms of MS, including spasticity, walking speed and incontinence. We want the pharmaceutical industry to engage with the SMC in that regard.
Let me make two points. First, I am happy to take the initiative and to contact the companies that have yet to apply to the SMC for acceptability of licensed products. I accept the general principle that our objective should be to have all licensed products available to MS sufferers through the SMC process. Secondly, I make the point to Lewis that, as a result of the reforms that were recently introduced in the SMC process, including the replacement of the individual patient treatment request process with the peer approved clinical system, I hope that we will see significant improvements in the reduction and elimination of any postcode lottery in the availability of the drugs. Although, as Jackson said, many of the changes were motivated by problems with cancer-related drugs, we are conscious that they also relate to drugs for MS and a host of other ailments, including cystic fibrosis. I underline our commitment to dealing with that situation.
I am sorry to interrupt you, cabinet secretary, but you have referred to several members by just their first names. Although members will be aware that “Michael” is Michael Matheson MSP, I ask you to clarify for the record and for those who are watching the proceedings who you mean, by referring to members by their full names.
“Lewis” is Lewis Macdonald and “Jackson” is Jackson Carlaw.
With regard to access to specialists, the Government recognises the vital importance of seeing the right person at the right time in the right place. Michael Matheson recently had pleasure of speaking at the national neurological advisory group’s learning and sharing event. The group was formed to take forward work to ensure continued improvements in neurological care, including for those who are living with MS. Access to specialists has been recognised by the group as a continuing priority and it is taking forward work in that area.
I am keen, as part of what Michael Matheson announced last night, for us to tackle variation between health board areas in access to treatment and in necessary resources. Last week, we published an audit of chronic pain services throughout Scotland, which looked at the variation between different board areas. I am keen to do the same for MS, with a view to eliminating those variations so that everybody gets first-class treatment, irrespective of where they live. That is extremely important.
It is also important that we have the right skills mix and the right number of staff in the right place at the right time. We are keen to ensure that that is the case particularly in relation to neurological resources. Six trainee neurologist posts will be advertised in the 2014 recruitment round, and will be filled via the national recruitment process. That will be a further enhancement of the neurological resource that is available to patients.
The treat me right campaign rightly highlights the need for people with MS to receive the necessary advice and information to make informed decisions about their care and treatment. The national advisory group is well placed to identify and address gaps in provision of the information that supports people to make decisions. We must also ensure that clinicians across Scotland consistently provide high-quality information that not only supports decisions about treatment, but supports people to self-manage their condition. That will be taken forward through the work on care pathways and patient experience. I am pleased to hear that the MS Society is an integral member of the advisory group and is, through the group, well positioned to help to shape delivery of neurological services.
I turn to the MS register. As a Government, we recognise that data is an important element in the delivery of improvement. We have provided funding of £70,000 to support the establishment of the Scottish MS register, which commenced work at the beginning of 2010. The register was set up to gather reliable data on which to establish the incidence of MS in Scotland. The MS Society has also provided funding to support the register and has been involved in the register since its inception to ensure that it has people with MS as its focus. The register is hosted by NHS National Services Scotland’s Information Services Division, and in 2013 it published its first national report. It has provided assurance that the MS clinical community is engaged fully in the register. Scottish morbidity report SMR01 data are being used to measure data completeness and, potentially, to identify patients who have not been reported to the register.
The data that are collected are used to produce quality feedback reports, which are provided to MS teams. Those include all known patients who have been given a confirmed diagnosis of MS in the past 12 months. However, I agree with George Adam’s point that we should look to expand the register, so that it will eventually include every MS sufferer in Scotland. I undertake to progress that specific action point, as well as the others that I have mentioned, because I am very conscious of the benefits of comprehensive registers in taking forward treatment and research for finding cures for conditions such as MS.
The register also monitors the referral process from the time of diagnosis to contact with an MS nurse. Boards can use the report to assess which stage in the referral process needs to be improved.
We are making substantial progress on all those areas, but further substantial progress needs to be made. I underline that—I think that all the parties in the chamber are at one on this—Scotland is the world capital for MS incidence. Therefore, a particular onus falls on us all to do whatever we can to make life as comfortable, easy and high quality as possible for sufferers, although the ultimate goal must be to find a cure.
Many thanks, cabinet secretary. I inform Parliament that Bob Doris has apologised to me and members in the chamber for having to leave the debate early.
13:31 Meeting suspended until 14:30.