Monthly Archives: May 2014

Further Penrose Inquiry Delays Announced

This morning (30.05.14) the following statement was posted on the Penrose Inquiry website

On behalf of Lord Penrose, I can report that good progress is being made in relation to the warning letters associated with the Final Report. Three batches have been issued. However, the process is not yet concluded. Two further batches of letters have still to be issued. Subject to the team progressing with the warning letter process at the anticipated rate, the Final Report will be published in the autumn of this year. A date for publication will be announced when the warning letters process is complete.

We have become increasingly exasperated by this interminable process and see this announcement as yet another delay. There can be few communities with such a strong collective understanding of the impact of the death of a partner and Lord Penrose continues to have our personal sympathy. However, that understanding cannot remove the frustration of seeing people affected by the contaminated blood disaster literally die waiting for the report to be published.

We will be seeking an urgent meeting with the Cabinet Secretary to express the concerns of our members.

EU threat to an open market for longer lasting factor products

Haemophilia Scotland is supporting the work of the EHC on longer acting clotting factor products

Haemophilia Scotland is supporting the work of the EHC on longer acting clotting factor products

All three of the bleeding disorders organisations with the most influence in Europe have written a joint letter raising concerns about how the first longer acting clotting factor products to get market authorisation might be treated within the EU.

The European Haemophilia Consortium (EHC)The European Association for Haemophilia and Allied Disorders (EAHAD), and the World Federation of Hemophilia (WFH) have joined forces to oppose the classification of the new longer action clotting factor products as orphan drugs in Europe.  Such a decision would mean that the first longer acting Factor VIII and Factor IX products to secure market authorisations would have a 10 year monopoly in the European Union.

The campaign highlights that the range of products currently being developed contain difference active substances so shouldn’t be considered as sufficiently “similar” to activate the orphan drug exclusion.

The letter raises four key concerns if ten year exclusivity was granted.

  1. The potential benefits from better products based on different mechanisms of action may never be realised in Europe;
  2. Patients will be deprived of potentially better clinical options for their individual clinical needs;
  3. There will be no competition and therefore higher prices – thereby potentially hindering or severely limiting patient access to these products in Europe; and
  4. There will be no cascading effect on lowering prices for current treatment products or broadening market access into European countries where patients have limited or severely limited access to treatment products.

Haemophilia Scotland are backing the campaign and have written to all six of Scotland’s newly elected MEPs urging them to give us their support.

WFH Congress Melbourne – Growing up with Haemophilia

Diagnosis can have a big impact on parents

Diagnosis can have a big impact on parents

Although some families find it helpful to spend time with older people with bleeding disorders it is important to remember that it can also be scary for patent who is new to the condition to meet people living with serious joint damage.

A bleeding disorders diagnosis can have a serious impact on the whole family.  Sibling relationships and rivalries are complex but there are surprisingly few studies look at families with a bleeding disorder.  There are positive sides to having a brother or sister with a bleeding disorder.  It can help improve a child’s ability to take responsibility as well as their communication skills.  However, some siblings, especially sisters and middle children, can experience anxiety and feelings of guilt.  It is striking brothers report that they believe that their own quality of life would be better if their sibling didn’t have a bleeding disorder.  Siblings also say that they need more information about bleeding disorders and that they need more time and attention from the adults in their lives.

A common mistake it to encourage guilt and to expect inappropriate levels of responsibility from young siblings; siblings shouldn’t be seen as supplementary care givers.  However, it can be very helpful for siblings to feel involved and to be encouraged to ask questions and express their feelings about the impact of the bleeding disorder on the family.  As far as possible parents should treat and discipline all their children the same way. However, ultimately, the best way to support children with bleeding disorders and their siblings is to support their parents and trust them to make good decisions.

Seeing your child in pain can be extremely distressing; as can having to hold a child down to find a vein and for treatment.  Parents often also feel an enormous weight of responsibility which can make it hard to let others, even another parent, care for a child with a bleeding disorder.  However, family bonds can be strengthened by the experience and some parents are more relaxed once they can do treatment themselves at home.

Adolescence is a difficult time for parents.  It is hard to step back and let a young person start taking responsibility for their treatment and to make their own mistakes.  Adherence to treatment can often worsen in this period as well.  Transition to an adult Haemophilia Centre can also add stress; although often parents are more worried about this than their adolescent with a bleeding disorder.

Haemophilia Scotland are very grateful to Baxter Healthcare UK for there generous support which enabled us to attend the WFH Congress in Melbourne.

WFH Congress Melbourne – Inhibitors

An inhibitor is when someone’s immune response to clotting factor products prevents it from working properly.  Someone with an inhibitor can face many of the same challenges as someone without adequate treatment.

Inhibitors continue to be the major problem associated with treatment.  Researchers are continuing to look at the role a wide range of factors play in the development of an inhibitor.  There is particular interest in any non-genetic factors which might play a role as it may be possible to change some of these to reduce the risk to patients.  For example there is evidence that when more product is used the first time someone is treated then their risk of developing an inhibitor is higher.  This puts a premium on early diagnosis as younger children are typically treated with smaller amounts of product.  Those who are diagnosed later often present with a bleed and therefore need more product the first time they receive treatment.

We were also informed about some of the potential therapies for inhibitors which are being explored; how can the immune system be taught to recognise Factor and tolerate it?  A wide range of techniques from using viral vectors or nano-partials as delivery systems through to working with T-cells and Tregs to selectively switch off parts of the immune response are being explored.

Haemophilia Scotland are very grateful to Baxter Healthcare UK for there generous support which enabled us to attend the WFH Congress in Melbourne.

The Scottish Government wants to hear from you about the support needs caused by the contaminated blood disaster

On behalf of the Scottish Government Health and Wellbeing Directorates, the Scottish Infected Blood Forum have been commissioned to manage a scoping exercise into the support needs of those infected or affected with hepatitis C through NHS treatment.  Please note that the survey is restricted to infected and affected persons in Scotland.  Those patients and families who were infected/affected by hepatitis C via a different route than NHS blood or blood products are outwith the scope of this particular exercise and should not complete the survey.
Although the focus of this exercise is on hepatitis C, it also addresses the effects of co-infection since there is a significant proportion of people who have faced additional challenges due to infected blood treatments.
The objectives for the scoping exercise are:
  1. To identify and engage with people who have been infected or affected with Hep C through contaminated NHS treatment, and to do so in an empathetic manner,
  2. To assess the need for various supports, in particular by identifying any current gaps in provision leading to unmet need, and
  3. To understand how people would prefer to be supported to best meet their own needs.
The final report of the Penrose Inquiry (the Scottish Public Inquiry into Hepatitis C/HIV acquired infection from NHS treatment in Scotland with blood and blood products) has not yet been published.  The Inquiry’s website provides the latest position on the progress of the Inquiry: which is that the report is expected by the end of the autumn of 2014.
The Scottish Government intend to review the existing financial support provisions for people who contracted hepatitis C from NHS blood or blood products when the final report and any recommendations of the Penrose Inquiry are being considered.   The findings of the scoping exercise report will be considered as part of that review.
The survey form and guidance is attached.   Although the initial deadline was Friday 29 August, this has now been extended to allow as many people to respond before the Penrose Inquiry Reports. Please post the completed form to:
PO Box 1
Brunswick House
51 Wilson Street
G1 1UZ
The questionnaire can also be filled out online at this address:

If you have any questions, please call:   Freephone 0800 970 6794.

WFH Congress Melbourne – Ageing

As more people living with bleeding disorders live longer our challenge is to find ways to add life to their years and rather than just years to their lives. People with bleeding disorders are now living long enough to experience the same range of age related conditions experienced by the rest of the population. Haemophilia Centres don’t have the resources or expertise to be a one-stop-shop for someone’s health needs. People with bleeding disorders are having to manage the relationship between a wide range of healthcare services.

Speakers offered practical suggestions such as planning early for ageing and staying active through regular exercise. The secret of maintaining mobility is to stay mobile – unfortunately that can be painful. Chronic pain was recognised as a major challenge; haemophilia has long being recognised as one of the most painful conditions in medical history.

It was noted that many people have fought their whole lives for their independence so can find it hard to ask for help. However, having a home assessment to see if modifications might be useful or getting a pharmacist to check all medication is still needed and aren’t contraindicated is sensible. Some people will also need help with maintaining a nutritious diet.

Veins are also a concern as many people worry about what will happen if they can’t treat themselves anymore. Similarly, would a residential or nursing home be able to cope with someone with a bleeding disorder? 60 years of prophylaxis equates to almost 7,000 injections. It is important to keep rotating injection sites to avoid developing hardened veins.

Haemophilia Scotland are very grateful to Baxter Healthcare UK for there generous support which enabled us to attend the WFH Congress in Melbourne.

WFH Congress Melbourne – Pain

Interesting use of sports tape reduce pain.

Interesting use of sports tape reduce pain.

Pain is triggered when the brain concludes, rightly or wrongly, that body tissue is in danger and action is required. Lots of areas of the brain are involved in pain which is why things like memories and smells can trigger pain. Pain cause loss of mobility and damages sleep which significantly reduces quality of life. 35% of people with Haemophilia surveyed in Europe in 2012 suffered from chronic pain.

The “find and fix” approach to medicine isn’t well suited to chronic pain which often has complex causes. No part of the body can send pain signals, only danger signals; the brain interprets it as pain. Therefore, your mental and physical state can make you more likely to experience pain. Levels of pains are always subjective.

Traditionally, opioid drugs have formed the backbone of treatment for chronic pain. However, many patients worry about toxicity and becoming dependent. It is now thought that in many countries opioids are over prescribed. If used long term then they can cause constipation, vomiting, apathy, mood swings and loss of concentration.

There is a lack of research on the treatment of chronic pain in people with bleeding disorders. However, good pain management should start with a pain assessment and often involves keeping a pain diary so a wide range of factors can be analysed. People with bleeding disorders can find it difficult to distinguish between a reoccurring bleed and pain from existing joint damage and should talk to their centre if they are in doubt.

Physiotherapy can play an important role in reducing chronic pain. Improving movement and posture can have a positive impact on pain. Increasing the strength do the muscles around a painful joint can reduce the pain. One speaker had found sports tape (Kinesiotape) very useful in tackling pain in people with Haemophilia. Another speaker highlighted the role of techniques such as complimentary therapies, positive thinking and psychosocial interventions in pain reduction. She also mentioned self hypnosis and stressed the importance of taking medications as scheduled and not only when you feel pain.

Haemophilia Scotland are very grateful to Baxter Healthcare UK for there generous support which enabled us to attend the WFH Congress in Melbourne.

WFH Congress Melbourne – Resilience

Life with a bleeding disorder can bring many challenges. The more resilient someone with a bleeding disorder is the better equipped they are to deal with them. However, being resilient is a process and can be encouraged, especially through positive role models. Ultimately, though, resilience come from within. Experience of living with bleeding can even make some people more resilient in the rest of their life.

Understanding and accepting your condition is an important step. Need to accept that being normal for you includes having a bleeding disorder. It is part of who you are but it doesn’t define you or dictate what you decide to do with your life. Sometimes it is important to step back and look at the bigger picture; ask whether all the aspects of your life are in balance.

Tips for balancing your life
– Time Management
– Make time for yourself and family
– Be creative
– Make plans
– Eat well
– Take Exercise

The session also reported on an impressive range of psychosocial projects in the Australia states. Haemophilia Scotland will be evaluating many of these innovative programmes to see if they could benefit people in Scotland.

Haemophilia Scotland are very grateful to Baxter Healthcare UK for there generous support which enabled us to attend the WFH Congress in Melbourne.

WFH Congress Melbourne – Disclosure

The pros and cons of telling people about your bleeding disorder

The pros and cons of telling people about your bleeding disorder

The issue of who to tell about a bleeding disorder is faced by everyone affected all over the world.

Many of the issues are viewed differently and change as the treatment available in a country improves. When treatment is poor more people choose not to tell people. There are concerns about employment, marriage prospects and in some cases the cultural or religious interpretation of disabilities. As treatments improve, and social stigma reduces, the benefits of informing people, such as safety and having reasonable adjustments made, become more important. In countries like Scotland, this progress was set back by HIV and Hepatits C.

Visible bleeding and bruising on men and women can be viewed very differently. In men it can be a sign of toughness but women can face stigma and assumptions of abuse. Strong taboos around menstruation are also a factor.

These days people make more personal choices. For some it is important to show they have nothing to be ashamed of. In some cases this “honesty is the best policy” approach can reassure schools and employers that the condition is well managed. On the other hand, where treatment is good, some people see no reason to single themselves out as different by telling people about their condition.

Ultimately, there are so many different social, cultural and personal consideration the decision about who to tell is not a “one size fits all” issue.

Haemophilia Scotland are very grateful to Baxter Healthcare UK for there generous support which enabled us to attend the WFH Congress in Melbourne.

WFH Congress Melbourne – Leadership Development Strategies

This session encouraged everyone at the Congress to think about how to encourage the next generation of leaders for the bleeding disorders community.

We heard about the transformative impact that people with bleeding disorders make when they take leadership roles. We heard from a range of people about there experience of getting involved.

This is something that Haemophilia Scotland is passionate about. We are currently looking for new Trustees with bleeding disorders. However, there are lots of other leadership opportunities with us other than being a Trustee. We are looking for people who are interested in driving forward all the different areas of our work.

The session also encouraged us all to give a higher priority to women with bleeding disorder and to the rarer bleeding disorders.

The best joke of the session was,

How many men with Haemophilia does it take to change a lightbulb?
None, their Mums change them.

Haemophilia Scotland are very grateful to Baxter Healthcare UK for there generous support which enabled us to attend the WFH Congress in Melbourne.

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