Living with Haemophilia

The M3 Blog team spoke to six people living with haemophilia in the UK and the US, two of them the mothers of young boys with the condition, to understand their challenges, fears, their relationship with healthcare professionals and the treatments they are experiencing. The stories they’ve shared show more than that, they are about acceptance and hope.

The interviewees represented a wide cross-section of different ages and different types of haemophilia and degree of severity, which means treatment and perception of the condition are also different. Almost all of them were diagnosed at birth or whilst they were still very young, and some have very early memories of it: “My earliest memory was when I was about three years old and had bleeding to the joint in my knee and was admitted to hospital”, shared ‘FK’, also 45, from Birmingham. He has severe haemophilia A.

To some, haemophilia has affected their lives significantly. ‘LM’, the mother of a 12-year-old boy with moderate haemophilia A and inhibitors, described how his condition has had a massive impact on him and on their family. Not only does he have to inject himself every morning before school, in the last six or seven months they have been to over 40 hospital appointments, not including A&E visits or admissions. ‘LM’ also shared interesting insights on being a mother of a boy with haemophilia: “There are so many different phases: when he was thrashing around in his cot I’d worry about him bruising his arms, then when he was starting to walk I was worried about him falling over. Now he walks to school on his own and you worry about that. Soon it will be the teenage years when he will be out and about on his own more. Every age brings its own challenges”.

For ‘DB’, ‘a 45-year-old man with severe haemophilia B from Hitchin, UK,  it was particularly difficult when at 19 he contracted hepatitis C through a blood transfusion, amidst what is now known as the contaminated blood scandal from 1970s and 80s. On the other hand, he said haemophilia hasn’t impacted his life negatively on the whole. As he couldn’t play rugby and football when he was younger, it meant that he concentrated on arts. He learnt to play the drums, guitar, sing and to act, skills that have shaped his social life ever since. “I don’t think that I would have acted or played music if I didn’t have haemophilia”, he reflected.

According to ‘KT’, a 57-year-old male from Utah, US, with mild haemophilia A, haemophilia hasn’t really stopped him from doing the things he wants to do, he just suffers the consequences more. “I have to be cautious of cuts and bruising even as mild as I am. I have joint problems based on bleeding which make some basic tasks difficult”, he explained.

In a similar way, ‘LOSP’, a 35-year-old with mild haemophilia A who lives in London, told us he feels haemophilia is part of who he is and that he tries to manage his condition by avoiding injury and looking after himself, taking injections only when he has to.

Everyone we spoke to said they have a very good relationship with their physicians and nurses. The ones living in the UK praised the NHS staff and the support from haemophilia centres in general.

‘A’, also from London, takes care of her 9-year-old son with severe haemophilia A. He’s been on a global trial for 6 months now, and according to her for her son the results have been great. “He’s had no bleeds at all. His factor level has moved from 1% to 7-8% which is a move from severe to mild, and so far the trial has been really good – the medication is a factor VIII substitute so is being trialled with patients with inhibitors. It’s helped his confidence so much so far”.

Gene therapy seems to be the hope for most of the people who have shared their stories with us. Despite different levels of severity and success of treatments, the possibility of leading a “normal” life is a prospect they all look forward to – for themselves and future generations.

To read each interview in full, please click on the links below:

‘DB’, 45-year-old man – Hitchin, UK

‘LM’, mother of a 12-year-old boy – London, UK

‘LOSP’, 35-year-old man – London, UK

‘KT’, 57-year-old-man – Orem, Utah, US

‘A’, mother of a 9-year-old-boy – London, UK

‘FK’, 45-year-old man – Birmingham, UK

Join M3 Global Research at ESMO and ERS

September will be a very busy month for M3 Global Research! We will be attending two large European medical congresses where we will be spreading the word about our paid studies and the work we do towards improving health and patient care.

Please save the date and pop by our stand to learn more about us. If you are already part of the M3 Global Research community, we invite you to bring colleagues to join us. We have some fun and exciting giveaways!

ESMO 2017 Congress

 ESMO

From the 8th to 12th of September we will be in Madrid for the ESMO 2017 Congress. The annual meeting for oncology professionals in Europe, in partnership with the European Association for Cancer Research, promises to provide important clinical updates where researchers and clinicians can exchange knowledge and ideas with the final goal of improving the lives of cancer patients. Come find us at STAND 214, hall 7.

For more information please access: http://www.esmo.org/Conferences/ESMO-2017-Congress/

ERS International Congress

ERS

From the 9th to 13th of September we will be in Milan for the ERS International Congress. This is the largest respiratory meeting in the world, with an outstanding scientific and educational programme that addresses researchers, clinicians, general practitioners and health professionals.

Come find us at STAND R.10. For more information please access: https://erscongress.org/

Looking forward to meeting you either in Madrid or Milan!

The M3 Global Research Team.

Talking to… Dr. Soon Song

Diabetologist based in Sheffield, Dr. Soon Song spoke to M3 about the growing health threat that is diabetes, medical students, doctor-patient relationship and the future of the NHS

Soon Song

Firstly, we’d like to get to know you better. Let’s start with what inspired you to become a physician and to specialise in diabetes management and cardiovascular risk?

I had always planned on becoming a doctor, and when I did a training post in diabetes I enjoyed it, and so decided to choose that as my specialism. Diabetes is a common problem, and it’s a specialty where you can really help people. Obviously there are complications, but often you can really make a difference. Also, there’s quite a broad-base of general medicine work beyond just diabetes which was very attractive to me.

What would you say are the biggest challenges you face as a physician in the UK?

The biggest challenge is the number of patients coming through the door. We have an ageing population so we have more chronic conditions like dementia, Alzheimer’s disease and other degenerative conditions which will drive up the cost of care. That leads to issues with social care because the current social system is not able to cope with the rising demand and sometimes it’s very hard to get a streamlined transition from hospital to primary care.

On the other hand, how have the healthcare services in the UK improved since you started to practise?

Things have improved a lot in the last twenty years. Medical treatment and technology have made significant progress – we have far more evidence to guide our practice and we work with more robust guidelines. Nursing expertise has increased with nurse specialists who have taken on more substantial roles, allowing medics to focus on more complicated patients. Things have to improve with progress, it would be worrying if they didn’t.

As a teaching hospital, we have medical students working alongside us on the wards. The emphasis of their medical education has changed from a focus on didactic teaching to problem based learning and communication skills, rather than a pure emphasis on knowledge. There is a lot more focus on patient-doctor relationships and managing patients holistically, which I think is for the better, and medical training needs to evolve to achieve these goals at undergraduate and postgraduate levels.

How do you see the doctor/patient relationship nowadays? What do you learn from your patients?

It can be a complicated relationship that is different for every patient. You want to empower patients and share with them decisions about their management, as the more engaged they are with their clinical care, the better the outcomes. Unfortunately, this may not be possible with everyone.

Your research interests lie in cardiovascular risk and complications in type 2 diabetes in the young. According to Diabetes UK, ‘diabetes is the fastest growing health threat of our times and an urgent public health issue. Since 1996, the number of people living with diabetes has more than doubled. If nothing changes, it is estimated that over five million people in the UK will have diabetes.’ From your experience, what are the main reasons for this catastrophic scenario? Also, what is the future for diabetes treatment? Do you see the situation changing for better?

The reason is basically lifestyle changes: less physical activity and more access to high calorie diets, which are all increasing the incidence of type 2 diabetes. A combination of environmental and social factors is having the biggest effect, as well as some genetic influences, but mostly it’s the environmental factor that is driving the rise.

The new treatments coming through in the last 4-5 years are much better – new agents like GLP-1 agonists and SGLT2 inhibitors which not only improve diabetes control but also tackle the obesity problem and induce weight loss with minimal hypoglycaemia risk, whereas older agents don’t help with weight loss and may cause hypoglycaemia and weight gain such as sulphonylurea. Obesity is an important issue in the management of type 2 diabetes, together with the complications of treatment-induced hypoglycaemia. The future looks more promising as the standard of care has improved driven by high quality research work.

What are your main sources for learning about new drugs and treatments in your area?

Publications in major journals, conference news and medical news are sent to me, and I go to conferences. Those are the main sources I’d say. Conferences are mainly in the UK but sometimes I go to European meetings. Due to the vastly improved communication technologies, you no longer have to physically attend to get the latest information from major conferences such as the ADA (American Diabetes Association) and EASD (European Association for the Study of Diabetes). You can log in and follow proceedings via webcasts. I get the latest updates on medical research and news almost daily via email. I don’t have much time to get away, so I rely more and more on electronic communication channels.

Do you feel you have a good support circle when talking about your professional life? Do you often exchange knowledge and discuss cases with your colleagues?

We have big teams here, working with consultants and nursing colleagues, and it’s great to be able to discuss cases. If you go to any hospital in the UK now you don’t work in isolation, you work in a team because you can’t work on your own – that’s the bottom line. It’s good to have a circle of colleagues you can discuss cases with, and bounce ideas off.

How do you see the use of technology by physicians and patients today, in particular patients who live with diabetes?

We use it because we now have CGMS (Continuous Glucose Monitoring for Diabetes device) where we can check blood sugar multiple times a day without needing to do finger pricks. This technology is becoming more widely used, especially for patients on insulin therapy, although we do limit the use to certain cohorts of patients as it’s quite expensive, for example those with poorly controlled diabetes despite insulin adjustments, or patients with severe hypoglycaemia, especially those with hypo-unawareness. I think technology will play an increasing role as time goes on. For patients on blood glucose meters, we’re able to download those results and information on to the computer system, and look at the blood sugar profile and see if there are any trends or problems occurring – this is now the norm.

For the more sophisticated technologies like CGMS the limiting factor at the moment is cost. Until it becomes more affordable or reimbursed by the NHS, it won’t be widely adopted.

What do you think will be the main challenges for healthcare in the near future?

There’s increasing privatisation in medicine, with private companies coming in to deliver services, although not for acute services. If you are a healthcare provider in the private sector your goal is to make profit, so things are changing. I think in the future the NHS may turn more towards the private sector to deliver more services through negotiations with the trust and CCGs. This may mean the consultants’ role and who they’re employed by may change. This will be a new territory that consultants have not been exposed to, or trained in dealing with this kind of scenario, which is already starting to happen and may become more widespread.

My concern is how this privatisation movement will turn out in the future: what changes there will be to the services and how the services are delivered, how much the consultant role will change, and whether there is job security.

Is there anything else you’d like to share with us that we haven’t covered already?

The people working in the NHS are still keen and they work hard, despite the cutbacks and financial restraint. Innovative work is still being produced, and the NHS is lucky to have this workforce. The challenge is to maintain this endeavour long-term in the face of low morale and I hope more positive changes will come. Patients are very lucky – everyone is doing the best they can.

Overuse of unnecessary antibiotics

The overuse of unnecessary antibiotics has been the topic of the Monthly pulse we delivered to our panel members’ inboxes in July. In the UK it is estimated that 1.6 million unnecessary antibiotic prescriptions are issued each year and this issue is not exclusive to the UK.

Patients are used to visiting the GP whenever they suffer from illnesses like upper respiratory tract infections and often they expect to be prescribed antibiotic treatment, regardless of the efficacy.

Consequently, 70% of bacteria have now developed resistance to antibiotics as a result of overuse, which is now leading to the development of new strains of antibiotic-resistant bacteria.

We asked our community where the responsibility of raising awareness about antibiotic overuse lies – with the prescribing physician, or with healthcare institutions and/or governmental bodies?

The survey was conducted amongst 15,875 M3 members in Europe (Uk, France, Italy, Spain and Germany), Canada and USA.

The results in Canada, Europe and USA are similar. More than 90% in from the threes respondent groups agree that is the responsibility of the physician to reduce unnecessary antibiotic use.

In Europe, 93% of the healthcare professionals surveyed in the UK, Germany, France, Spain, and Italy think that it is the responsibility of the physician to reduce unnecessary antibiotic use. Spanish and Italian respondents, at 95%, are the most supportive of this view. Conversely, with 85% in favour, French doctors are the least supportive.

By registering with M3 Global Research you will receive the Monthly Pulse directly to your inbox and you will be able to give your opinion about relevant healthcare related issue and compare your thoughts with your colleagues around the World.

overuse of unnecessary antibiotics

 

overuse of unnecessary antibiotics

AUGUST: Psoriasis Action Month

August is Psoriasis Action Month! How much do you know about psoriasis treatment options?

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Psoriasis is a chronic, noncontagious immune-mediated disease that appears on the skin. It occurs when the immune system sends out faulty signals that speed up the growth cycle of skin cells.

It affects more than 8 million Americans. An estimated 125 million people worldwide live with psoriasis.

Plaque psoriasis is the most common form of the disease, affecting 80 percent of those with psoriasis. It appears as raised, red patches covered with a silvery white buildup of dead skin cells. Other types of psoriasis: o Guttate: Small dot-like lesions o Pustular: White blisters surrounded by red skin o Inverse: Appears as very red lesions in body folds, such as behind the knee, under the arm or in the groin o Erythrodermic: severe form of psoriasis that leads to widespread, fiery redness over most of the body. It can cause severe itching and pain, and make the skin come off in sheets.

Psoriasis can appear anywhere on the body, but most frequently occurs on the scalp, knees, elbows and torso. The exact cause of psoriasis is unknown. Genetics and external factors known as “triggers” play a role in the develop.

This August, the National Psoriasis Foundation (NPF) has developed new tools to help you take control of this disease. To start, test your knowledge on psoriasis treatment options!

Psoriasis Action Month

All quiz takers have the option to receive an NPF journaling kit. * Then, share this quiz with your colleagues and friends to increase awareness about Psoriasis Action Month and encourage others to take an active role in treating and managing the disease.

* Due to shipping costs, journaling kits are only available to residents of the U.S. and Canada. But anyone can get in touch with the NPF Patient Navigation Center to ask a question about their disease and learn more about treatment options!

All rights belong to the National Psoriasis Foundation (NPF). We would like to thank the National Psoriasis Foundation (NPF) for sharing with us their instructive quiz.