Public Petitions Committee

Meeting date: Tuesday, June 23, 2015

Official Report 567KB pdf

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New Petition

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National Service Delivery Model (Warfarin Patients) (PE1566)

The next item of business is consideration of new petition PE1566, by Mary Hemphill and Ian Reid, on a national service delivery model for warfarin patients. Members have a note by the clerk, a SPICe briefing on the petition and the submissions. We have also received a late submission from the Anticoagulation Self-Monitoring Alliance, which is on members’ desks.

I welcome Mary Hemphill and Ian Reid to the meeting. They are accompanied by John Fegan, the chairman of the Scottish Association for Children with Heart Disorders. I invite Ms Hemphill to make a short opening speech of no more than five minutes. We will then move on to questions.

I thank the convener and the committee for hearing our petition today and our request for the implementation of a national service delivery model of care for patients who self-present to self-test or self-manage their warfarin levels when it is deemed safe and effective to do so by a healthcare provider. That model should include a safe, uninterrupted, co-ordinated infrastructure for patients in paediatric care who self-test their warfarin levels when they make the transition to adult services.

I am an adult congenital heart patient and, like many of our diverse, inspiring and growing paediatric and adult population, I am on warfarin to thin my blood. I am a wife and mother, and I am employed. I lead a healthy lifestyle after the implantation of two metal heart valves, an aortic root enlargement and a pacemaker.

My biggest fear is having a stroke. After my first open-heart surgery, I was carried by my husband to attend my anticoagulation service. My family were advised that the service did not provide home visits. I requested to work with my local care providers to self-test and, if it was safe and effective to do so, self-manage my anticoagulation levels. My request was refused. The explanation was not person centred, with no one actively listening to my request. It was at the directive of Greater Glasgow and Clyde NHS Board, and the reason given was that I do not work away from home.

A few weeks later, I was also refused an urgent appointment at my anticoagulation clinic, which an out-of-hours general practitioner asked me to obtain after he prescribed me a course of antibiotics that would increase my anticoagulation levels in a way that, if not checked, could prove fatal. With our nursing staff and local clinic reduced, I found myself placed in a catch-22 situation. Had I not been fully informed and thus able to challenge the decision, the outcome could have been devastating. My concern is for those patients who would not have questioned that decision.

I went on to meet a haematologist at Gartnavel hospital, who agreed that my time in therapeutic range would improve with self-testing. I would be patient number 31 in the programme. I agreed to speak to my GP to provide my test strips on prescription. That was well supported and I was provided with my machine by our charity, as such machines are not freely available. The next day, I received a call from Gartnavel anticoagulation nurses to advise that the funding for self-testing training had been stopped.

I continued to challenge that position and wrote many letters to the then Minister for Public Health, Michael Matheson, who advised me that the decision was for individual health boards. Later, in a parliamentary motion, Mr Matheson commented that warfarin patients in Scotland were much older than the United Kingdom average of 65 years. However, I believe that the decision should not be dictated by someone’s age but should be person centred.

Finally, I met the clinical manager of anticoagulation services, who provided me with a truly person-centred approach and support, as did the nurses at my local anticoagulation clinic. Last year, I met the chief executive of Greater Glasgow and Clyde NHS Board. That was well received and led to a nurses day, at which I was supported by John Fegan, the chairman of the Scottish Association for Children with Heart Disorders, and another adult congenital heart patient, who gave an inspiring insight into her long-term condition and her quest to self-test.

Standard operating procedures were drawn up for young adults who move from the Royal hospital for sick children to adult services, whose parents and carers are taught to self-test when they are prescribed warfarin in paediatrics. I am pleased to say that that standard procedure is now being used, although it is still in its early stages. It will ensure an uninterrupted care pathway for Greater Glasgow and Clyde NHS Board patients—not only those in our congenital heart community but other young adults with other long-term conditions who also require warfarin. If that is achievable for Greater Glasgow and Clyde patients, it should be easily available and accessible across Scotland.

In September 2014, I began self-testing. My time in therapeutic range has improved and I am able to take control and gain an acceptance of my long-term condition. Self-testing proved invaluable recently when I was in hospital. As a result of multiple open-heart surgeries in a short period of time, access to my veins is now very difficult. I was able to test my own levels safely and effectively.

There are approximately 80,000 warfarin patients in Scotland in 14 regional health boards. The purpose of the petition is to request a national service delivery model of care for all warfarin patients who self-present to self-test or self-manage their warfarin levels, when it is deemed safe and effective for them to do so. We want them to be given a person-centred care approach that is in line with the local delivery plan that is set out in the Scottish Government’s 2020 vision for the NHS, which is

“that by 2020 everyone is able to live longer healthier lives at home, or in a homely setting and, that we will have a healthcare system where we have integrated health and social care”

and

“a focus on prevention, anticipation and supported self-management”.

To achieve that, we require a whole-system approach and a culture change whereby patients can work in partnership with their healthcare providers and access information, communication, education and support. It must be an active and on-going partnership. The NHS will undoubtedly see positive benefits from that, as patients’ outcomes improve and patients, parents and carers become more informed, empowered and educated about their condition or that of their child.

I refer the committee to the Scottish intercollegiate guidelines network guideline 129 and the evidence from the National Institute for Health and Care Excellence, Healthcare Improvement Scotland and the Royal College of Physicians of Edinburgh, which all support self-testing and self-management.

11:30  

Patients wish to embrace the key objective in “Gaun Yersel!”, the Scottish Government’s self-management strategy, which is written by patients with long-term conditions for patients with long-term conditions. The strategy was endorsed by Nicola Sturgeon, who is now our First Minister but who was then the Cabinet Secretary for Health and Wellbeing. It says that we should learn from people’s own experience of living with a long-term condition and that we should work in partnership with the individual and provide access to timely and appropriate information and support to enable them to make well-informed decisions about their lives. It concludes that

“life is for living, and for living well, not for enduring.”

The Scottish Government writes fantastic protocol to encourage and support self-management yet, for warfarin patients, the delivery at ground level is difficult, with patients and healthcare providers facing many challenges and barriers. No one should have to fight for care, particularly at a time of ill health or uncertainty.

I wish to thank my co-petitioner, Ian Reid, and John Fegan, the chairman of the Scottish Association for Children with Heart Disorders, for supporting me today. I also thank the patient who gave an inspiring insight into her quest to self-test at a Greater Glasgow and Clyde NHS Board nurses day, and patients who have written to their health boards and who wish to be provided with the patient-centred care approach but have been refused or challenged. Finally, I thank the committee and those who have endorsed and supported our petition.

Thank you for your presentation.

Self-testing and self-management have been the subject of discussion for a long time. Why has so little progress been made?

There is a lack of education. The anticoagulation nurses are fantastic, but they perhaps do not have the support of the health boards. The approach is not promoted anywhere, even though there is factual research to show that it helps.

People have to have a buy-in because, to an extent, they are taking responsibility for their own care. That is why, in the way that we worded the petition, we were careful to say that people had to self-present or say that they wished to self-test. That should ensure that there is buy-in from the patients who are involved.

I wanted to take control of my condition. It was quite difficult for me to accept what had happened in such a short period of time. I was quite determined that I was not going to be a victim. I wanted to get back to work and to lead as much of a normal life as I could.

I note that studies have shown that there are notably fewer strokes and deaths as a result of clots among patients who have self-monitored. To what extent do you think that that is a result of the greater understanding of their condition and of the importance of testing and adjusting dosages, which might change following illness and so on, that they have gained as a result of self-management?

Initially, self-testing is a huge change for patients. At first, people might be apprehensive, because they want to ensure that their care is safe and effective at improving and sustaining their quality of life. It is a huge cultural change in the delivery of anticoagulation care. However, if we can get the help, support and clinical guidance in place, it can prove to be beneficial, worth while and cost-effective.

We have an ageing population, and if more people self-test, that will support patients who really need to see their anticoagulation clinicians. The number of people who are anticoagulated has risen by 10,000 in the past five to 10 years, from 70,000 to around 80,000. How can our clinics sustain that? I found that I needed a lot of care because my medication was changing. I was on antibiotics, which can increase a person’s anticoagulation levels. When you self-test, you still work with your care providers—they are still there via telephone or email if you need them.

Patients are more educated and have more of an understanding. Families and carers in the paediatric community are already taught to self-test. That is standard in paediatric care.

Do you agree that there is a case for all patients and carers to be better informed about their conditions, even if they are not self-managing?

Yes, I think that there is. That might not be the case for all patients, but it is the case for those who want to learn, get engaged, understand and be educated. If the support is there, that is easily done. Initially, it was difficult for me to get someone to listen, but I pushed for it. Not everybody would do that; not everybody knows about self-monitoring or would push to make it happen.

I understand where you are coming from and I understand the pressures on the health service, but I do not understand why the health boards would not want to support your proposal on self-help. Surely that would assist them in delivering the service that you need. It does not make sense to me that the health boards would not want to do that.

I think that the issue may be to do with departments in the health service—the way that they think about the costings is all wrong; if one department does not bear the cost, the other department is not interested. That is sometimes where things fall through.

I am very supportive of the petition, convener. We should encourage the health service to support the idea that Mary Hemphill has presented, because I think that it makes sense. With self-testing, not only would the patient’s wellbeing be secured, but we would get value for money from the health service. It is a win-win—it ticks all the right boxes. I do not understand what the issues are, and I want to find out why health boards do not want to support what Mary Hemphill is proposing.

Only 1 per cent of warfarin users in Scotland self-assess and self-monitor—that is about 800 people out of 80,000. You said earlier on that your idea is about promotion and education. Is the problem the fact that health boards do not want to promote it? Are they the obstacle that means that so few people are self-monitoring?

My first letters went to Michael Matheson. There had been a round-table event, which led to Nanette Milne having a parliamentary debate on the matter. My initial issue was with the comments that were made—they were very negative. I sent emails and letters to Mr Matheson and he replied saying that the matter was the responsibility of individual health boards but, ultimately, individual health boards are accountable to the Scottish Government. We needed someone there, not to change things at that minute—I would not expect anything to be changed on the basis of a request from just one person—but to listen.

One of the main issues that we have, in any health or social care environment, is the transition from child to adult services. I was an ordinary patient who could tell from speaking to people that there were gaps. If we were able to improve that situation for Greater Glasgow and Clyde NHS Board just by speaking to other people and engaging with them, we could achieve a lot if people would listen. I had been through a lot. I would never do anything to make my health worse or promote something to anyone else that would make their health worse.

I would like to come in on that. Mary Hemphill and I met Robert Calderwood of Greater Glasgow and Clyde NHS Board, and subsequently Myra Campbell, to discuss the setting up of a standard operating procedure for the care that is offered at the Royal hospital for sick children in Glasgow, and the transition into adult care.

What came out of that was an operating procedure that the board currently uses. However, somewhere in the system, when the children move on from paediatric care to adult care, they can be lost. The board says that no one gets lost in its area, but when the children move elsewhere in Scotland, when they are assessed—or not assessed, as the case may be—they find that they are no longer involved in self-monitoring and that they have to attend anticoagulation clinics. We are saying that that is wrong. It is a waste of money, for a start, and the patient, who is already used to self-monitoring, has to go back to attending clinics.

I know that there is also self-monitoring in cases of diabetes.

You said that patients’ quality of life and fitness are greatly enhanced by self-monitoring. That is extremely valuable, as it is important to enhance people’s quality of life.

I am a little puzzled about why the health board does not recognise the benefits of self-monitoring. The only thing that I can think of is that there is a resource issue somewhere. I do not understand that, because enhancing people’s quality of life has value—I would put a value on that. I very much agree with you.

The factual evidence runs in parallel with the Scottish Government’s strategy and what it is trying to achieve in self-management. The Government can ensure that the strategy is achieved and that that is done on the basis of facts. There is evidence that self-management works for people. The issue is joining all these things together.

I commend you on your determination to get the self-management monitoring system in place for yourself and on your discussions with Greater Glasgow and Clyde NHS Board. Do you know how many patients in the health board area who are in a similar situation to you can self-manage?

I went to see Dr Mike Leach, a haematologist, who looked at my therapeutic range and said that I would be patient number 31 to self test. Compared with England and other countries in the EU, the promotion is not there in Scotland—you have to push for self-testing.

When were you told that you would be patient 31?

It was about a year ago.

I am trying to extrapolate from that. There are 80,000 warfarin patients in Scotland. A year ago, you were patient 31 for self-management in Greater Glasgow and Clyde NHS Board, which we know has a high incidence of heart issues, although it is not as bad as some of its neighbouring health boards. In response to an earlier question, John Fegan said that when people—particularly young people—move out of that board’s area and go for treatment in their own health boards, they are in effect being refused or denied the opportunity to self-manage and monitor their condition.

I know that you lodged the petition to get a national standard in place. Why are other health boards reluctant to introduce the self-management monitoring regime for patients?

The machines that we use are not freely available—they have to be purchased. Charities purchase them for children from the Royal hospital for sick children. People have to get their GP to buy the test strips. People have to speak to their anticoagulation clinic and—rightly—make sure that it is safe and effective for them to self-manage. It is not easy. There are quite a few obstacles before the decision can be made. I would not have realised the obstacles if I had not been through the process.

When I was fighting for self-testing, I met a few patients in the system who had faced the same obstacles. It does not come easy to patients when they ask to self-test. When we met the chief executive of Greater Glasgow and Clyde NHS Board, our request was well received and the health board listened. There was a nurses day, when the health board educated its nurses. That is good for that board, but there are 14 health boards.

My main concern is that, if self-testing is safe and effective, it should be easily accessible for everyone. When someone is unwell, they should not have to fight and write letters to help people. People know what happened to them and do not want it to happen to anyone else.

According to figures that we have in front of us, the average cost of a machine is about £400 and a test strip costs about £2.95. On average, how often would a patient test themselves?

11:45  

If I am stable, I will probably test myself an average of once every two to three weeks, but that varies if my medication changes. Every individual is probably different. The initial outlay would be high, but some of the research and studies show that the cost reduces dramatically in the long term.

You say that, at the moment, charitable organisations are providing the machines for children.

Yes.

So they are picking up the cost. Does the health board or the NHS pick up the cost of any of the testing that is done?

The test strips are covered.

Does your GP prescribe them?

GPs are getting better at it, but we have seen occasions—

Patients have occasionally come to us to say that their GP will not take the cost of the strips. I know of one patient who changed their GP because she could not talk them round.

So the GP can be a blocking point as well.

Yes.

Quite a galaxy of people and organisations have supported your petition. With my colleague Nanette Milne and also Richard Lyle, Jackie Baillie, Richard Simpson and Margaret McCulloch, you have a broad range of cross-party support in the Parliament.

It appears that the Scottish Government, not individuals, needs to be persuaded of the request in your petition. I understand that the Government’s view is that there is no need for what you ask for. It says that health boards already have a responsibility to have protocols in place. That does not tell me much.

Do you know what the protocols are, who is responsible for establishing and reviewing them, when they were last reviewed and whether they are consistently applied? From what I have picked up, it seems that they are not consistent. Is it each health board’s decision to come up with a local protocol? Do you know whether each health board has done that and when it was last considered?

As far as I am aware, there is no standard protocol; the approach is up to each health board. We are aware that the National Institute for Health and Care Excellence guidance note was updated in September 2014. We asked Greater Glasgow and Clyde NHS Board to update us, as the evidence notes that we have are not updated or clear.

I will come back to that in a moment. After the round-table discussion that took place in 2013 and the various motions lodged and questions asked by colleagues, a number of recommendations were made. In general, what progress has there been on those?

None that I am aware of. I probably started looking for self-testing at that time. That is when I started reading a lot about it.

Your petition was born out of frustration that we have gone through an extensive parliamentary process—a round-table discussion, a members’ business debate and a series of parliamentary questions—and, as far as you are concerned, we are not much further towards equal access across the country. That is what you are seeking so, for want of a better description, a boot up the backside to make health boards come up with a national standard would resolve the issue just as much as national service delivery.

Yes. Self-testing should be achievable and accessible for all patients. If patients ask the question, someone should know where to find the answer and how to communicate it. I never got that communication.

The Scottish Government promotes person-centred care so, if a patient asks why they cannot do self-testing, it is important for them to understand why and whether that is for their benefit. I waited until my international normalised ratio was stable before I asked; I was quite aware that I wanted everything to be settled before I asked to test myself and manage my own condition.

For clarification, you said that Greater Glasgow and Clyde NHS Board decided to allow self-testing to go ahead. Is it the health board or the consultant that allows people to self-monitor and self-test?

I am looking at the figures that you gave us. You are patient 31; you will get a badge with that on it. Did the consultant you saw decide that you could self-monitor and self-test, or is it a health board policy that every patient who presents and asks to go on to that regime is afforded the opportunity to do that?

I think that clinicians are reluctant. They require to provide support and education, but I do not think that they are supported by their health board. As patients, we need to come out and speak. We need to give our stories and help people to understand the challenges that we face.

I eventually met the clinical manager of anticoagulation services. It makes a difference when somebody wants to listen and understand—when they listen to what people have been through and why they want to do something, and when they consider what is safe for people and go through people’s background. That made such a difference, but that difference could have been made on day 1.

The Scottish Government could issue guidance to health boards, which could then issue guidance to consultants or clinicians. The clinicians could then make a clinical decision, as they often do, about whether the person is suitable to self-manage or self-monitor. It is a matter of getting into perspective what the guidance might look for in the expectations of health boards and particularly clinicians in their practice with patients.

Yes.

Mr Reid, would you like to say anything?

Mary Hemphill has said just about everything.

If there are no further questions, what action on the petition would the committee like to take?

I would very much like the committee to write to the Scottish Government. I am struck by the similarities between this petition and a petition that the committee considered on the availability of insulin pumps across Scotland. A similar Government attitude required the minister to intervene to have the various health boards report on the progress that they were making in achieving their own protocols. That had to be put in place before anything happened.

I would very much like to know what the Scottish Government’s position is on self-testing. On the back of that, I might wish to recommend that we take evidence from the minister, because it seems all a bit woolly as to why no proper emphasis is being put on coming up with a consistent position and applying that across Scotland.

Can we also write to ask all the health boards what they are doing to promote self-monitoring for warfarin patients?

I was going to make a similar suggestion, but I am keen to target health boards that neighbour Greater Glasgow and Clyde NHS Board and find out what the issues might be, because young patients might be transferred into those boards’ care from services in Greater Glasgow and Clyde NHS Board. I am thinking about asking Lanarkshire NHS Board in particular and maybe Ayrshire and Arran NHS Board how they perceive the difficulties for patients who have been on self-monitoring or self-management regimes when they move into adult services in their own health board and are denied self-monitoring.

We could also write to the sick children’s hospitals to find out what measures are in place for when children leave their area of influence. Do they pass on the casework to ensure that the service continues or do they simply abandon children? We could find out whether there is any uniformity in the follow-up treatment when people have volunteered to monitor themselves. That is important.

I will follow up on David Torrance’s suggestion. If we are writing to each health board, it would be interesting to invite them to clarify what their protocols are, as that may illustrate the variability of the levels of expectation and service, which we might subsequently discuss with the minister.

Boards will also be able to tell us how many people self-monitor in their areas. Can we ask for those figures?

Members have raised a number of action points. Do we agree to pursue them?

Members indicated agreement.

I thank Mary Hemphill, Ian Reid and John Fegan for their attendance. We will now suspend for a couple of minutes.

11:55 Meeting suspended.  

11:56 On resuming—