Join us at the Loch Ness Marathon Festival or sign up to be a runner!

 

loch ness

We will be at the Loch Ness Festival on 25th September, and would love to see you there! Please drop by and say hello, find out more about our events and support, and join us for lunch. We will have a meeting point running from 11am – 1pm and will be going for lunch at 1pm – There will be loads happening on the day, including live music, a food fayre, whisky tasting, locally crafted beer and family activities.
Festival%201-W800
AND we are also looking for fundraising runners!! There are a variety of races – 10k, 5k and ‘Wee Nessie’ for 5 years old and under. Please see our just giving page or get in touch if you would like to run for Haemophilia Scotland: https://www.justgiving.com/Haemophilia-Scotland
We hope to see you there!

Take part in the UK Government review of Personal Independence Payment (PIP)

DWP Department for Work and Pensions government

The Department of Work and Pensions (DWP) of the UK Government has launched a call for evidence for a review it is conducting into the Personal Independence Payment, known as PIP.  Some members have told us that they have had problems with this benefit so we think it is important that people with bleeding disorders take part in the review.  This is one of the benefits which will be becoming the responsibility of the Scottish Government so it is important we have a good understanding of it’s weaknesses so we can lobby both Governments for improvements.

The DWP want to hear from both organisations and individuals who have information about how all aspects of the PIP process and assessment are operating.Complete our PIP Survey  If you would like to make your own submission the deadline is 5pm on the 16th September 2016.  You may find it quicker and simpler to complete our short survey which we will use to inform our submission.

On a related topic, we believe that many people with bleeding disorders in Scotland are not claiming all the benefits they are entitled to.  Although many of the Haemophilia Centres can refer people for benefits advice already, we are looking at ways to make advice easier to access and more closely related to bleeding disorders.  If you’d be interested in being kept informed about this please complete the contact form below.

Diagnose Malawi: Are you dancing? We are asking!

new-york-african-dance-classes

 

We are delighted to confirm the Diagnose Malawi fundraiser event on 27th August will be supported by wonderful Leith Labs. We will be at Ocean Terminal from 11:30-4pm, and have some great activities lined up! The day will start with a performance by Zawadi Women’s Choir, then we will have lots of exciting activities for you to take part in, including our Haemophilia Blood Doctor Crime Scene (aka Murder in the Mall?), an African Dance class, a chance to learn about breakdancing, and science and art workshops.

 

We would love you to be part of this event, whether it is helping us collect on the day, spreading the word, doing a sponsored dance (oh, yes!) or helping out at the crime scene. Just get in touch with Emma (emma@haemophilia.scot / 0131 281 0857) if you would like to be involved. You can also just turn up on the day, join in all activities or pay by any donation possible for the dance class.

If you would like to take part in the sponsored African dance at 1:30, go to our just giving page: https://campaign.justgiving.com/charity/haemophilia-scotland/malawi. The dance session will last for 45mins, will be suitable for all levels and will be in a public space!  However, remember that everyone’s experience of their bleeding disorder is different and no one knows your body better than you do.  While staying active is very important in the management of bleeding disorders you should assess the risks before trying any new activity.  If you would like to trying dancing at the event please consider treating before coming along and speaking to your Haemophilia Centre about the risks.

And just to get you in the mood, here is Hemaware’s article on hip hop and haemophilia: http://www.hemaware.org/story/motion-lotion

breakdance

 

 

 

Afternoon Tea at the Signet Library

cake 2

Well, it is Afternoon Tea week, so what better time could there be to announce our upcoming Women’s Group event?!

On 11th September, we will be going back to The Signet Library, Parliament Square, The Royal Mile, Edinburgh (from 1:30 – 4pm). This meet up will give us the opportunity to review our objectives, and plan our upcoming activities (also a good excuse for cake and a catch up!).

Asbloodbooth a result of our first two meetings, we  produced a leaflet on women with bleeding disorders for the My Girl’s Blood Booth at the WFH Congress in Orlando July 2016. Our leaflet aimed to bring relevant information and awareness to health professionals, and women and girls with bleeding disorders. All our thanks go to Susan Warren for taking the leaflet to Orlando, and to Cheryl Nineff D’Ambrosio of My Girl’s Blood Booth – it looked like a great success!.

We have lots of other exciting ideas to discuss, and we are setting up an email group. If you are not a member, and would like to join, please get in touch with me at emma@haemophilia.scot or 0131 281 0857.

The Haemophilia Scotland Women’s group was formed on 31st January 2016, especially for women affected by von Willebrands Disease, haemophilia and those who carry the gene.

European Medicines Agency investigation of Direct Acting Antivirals

European Medicines Agency - EMA

Whenever a new product is adopted there is a possibility that a the larger numbers patients with different histories and settings will reveal effects that weren’t apparent during the clinical trials.  That is why post marketing monitoring and initiatives such as the Yellow Card scheme are so important.

The new Direct Acting Antiviral treatments for hepatitis C have been very successful in helping many Haemophilia Scotland members achieve Sustained Virological Responses (SVR).  Many of our members had a history of unsuccessful and grueling treatment involving interferon. So far, members have reported some, comparatively mild, side-effects but overall have responded well to the new treatments.  Nevertheless, it is important to remain vigilant.

Globally, there have been some anecdotal reports of hepatitis B re-activation in some patients who have been infected with both hepatitis B and C viruses and who were treated with direct-acting antivirals for hepatitis C. Hepatitis B re-activation is the return of active infection in a patient whose hepatitis B infection had been chronic.

In April 2016, a study was published regarding the risk of liver cancer (hepatocellular carcinoma) returning in patients who were treated with these direct-acting antivirals for hepatitis C. The study suggests that some patients were at risk of their cancer coming back earlier than in those patients with hepatitis C who were not treated with direct-acting antivirals.

To investigate these reports the European Medicines Agency (EMA) began a review in March 2016.  The current status of their review is “Under Evaluation”.  However, their website does provide a summary, key facts, and all documents for those who would like to know more. The scope of the EMA review extends to assessing the risk of liver cancer with these medicines.

Commenting on their review the EMA states that, “While the review is ongoing, patients should speak to their doctor or pharmacist if they have any questions or concerns.”

Sources include Haemophilia World.

Scottish Government timetable for #ContaminatedBlood financial support payments

Applecross Pass

The road to improved financial support payments has already been long and winding.

Last week, those who represented the patient point of view during the financial support review group met with Shona Robison MSP, Cabinet Secretary for Health, Wellbeing, and Sport.  Several of us had been raising serious concerns about the fact that the new payments, announced in March, have not started yet.  Many Haemophilia Scotland members are in urgent need of this additional support. Every day of delay causes additional stress and anxiety.

At the meeting we were told that different groups can expect payments at different times.  If you are currently receiving a payment then the increase is estimated to come in October 2016. However, this timetable is subject to the issues set out below.  For example, the boards of the UK-wide bodies have not yet agreed to this timetable.

Those who will get a new support payment will have to wait until the new Scottish scheme is set up in April 2017.

Following the meeting, the Scottish Government have produced this short paper which details the expected timetable and gives more information.

Payments expected in October 2016 (backdated to April 2016 where applicable)

  • Stage 1 payment to increase from £20,000 to £50,000 (an additional £30,000 for those already in the scheme).
  • Stage 2 payments to increase from £14,749 to £27,000.
  • HIV payment to increase from to £27,000
  • Co-infected payment to increase from £14,749 £29,498 to £37,000

Payments to be start with the new scheme in April 2017 (not backdated)

  • Widow(er)s’ pensions
  • The new Scottish discretionary grants.  This will replace the Caxton Foundation and the discretionary element of the MacFarlane Trust (MFT). It will honour existing commitments from these successor organisations.

After April 2017 payments will be made from Scotland.  The scheme is likely to be administered by National Services Scotland (NSS) which is effectively an all Scotland NHS Health Board.  There will be an advisory group including stakeholders but other governance arrangements aren’t clear yet.

Issues to be overcome before October 2016

Before the UK schemes can be used to make the new Scottish payments there are some hurdles to be overcome.  These are what are causing the current delays.

  • Westminster must pass Tax Orders so that none of the payments are liable for tax.  This has to happen whichever mechanism is used to make the new payments.
  • To use the existing scheme to make the new payments all four nations of the UK must agree.  At the moment only Scotland is signed up.  We have asked all three of the other Government not to stand in the way of Scottish payments and have had these replies from England and Wales.  There have also been two stories in The Sunday Herald to put pressure on England in particular.
  • For the payments to be made in October there must also be agreement from the Boards of the UK-wide schemes.

Issues to be overcome before April 2017

Before the Scottish scheme is established there are some important decision to be taken including,

  • Changes to the threshold for receiving ongoing support.  The threshold is to depend on whole health impact of infection rather than focusing on liver damage alone.
  • A reexamination of the ability of those with incomplete medical records to apply.
  • An appeals procedure for those who think they should be in the Scottish scheme.
  • A procedure for converting ongoing payments into a lump sum settlement.
  • How the new discretionary scheme will operate in practice.

Groups will be established shortly to look at these points.

This article was amended on 19 August 2016 following a request from the Scottish Government make it clearer that at the time of publication none of the boards of the UK-wide bodies had given formal agreement to implement the new Scottish payments.

NOhep Day 2016

Dan Farthing-Sykes, Jeff Frew, Robert Girvan, Sam Baker, Shona Robison MSP, Petra Wright. Credit: Petra Wright, Hep C Trust.

The Birchgrove Group interview Mark Simmons

The Birchgrove Group is a support group and platform for views for people with haemophilia, their wives and partners who were infected with HIV/AIDS and hepatitis C through blood products in Great Britain.  There were 60 people in the Scottish bleeding disorders community who were infected with HIV in Scotland.  Today, just 21 are still alive.

Mark Simmons is a very well respected Haemophilia Social Worker who has been working with people with bleeding disorders and HIV since the very early days of the infections.  The Birchgrove Group has released this interview with Mark on their YouTube channel.  We are reposting it here that more people can have an opportunity to hear Marks views on how the HIV infections have impacted the bleeding disorders community in the UK.  It is particularly interesting to see how the Scottish process is viewed by affected people in England and hear the similarities in how the infection has affected people’s lives either side of the border.

If you have been a these issues and would like to discuss them, and you use the Edinburgh Haemophilia Centre, then you might like to contact the new Psychological Support Service.

It’s World Hepatitis Day, join us in saying #NOhep

NOhep...LOGO (Square)

Hepatitis C is a blood borne virus which is a major cause of liver disease. If it isn’t successfully treated the damage it causes to the liver gets worse and worse, often leading to cirrhosis or liver cancer.  Having the virus has effects beyond the liver too, in particular problems with concentration and memory and an increased risk of a wide variety of other complications.  Viral hepatitis is the 7th leading cause of death globally, accounting for 1.4 million deaths per year. There are an estimate 37,000 people in Scotland with Hepatitis C.  Find out more.

In the 1970s and 1980s the plasma derived clotting products used to treat bleeding disorders such as Haemophilia were 100% infective for Hepatitis C.  478 people in Scotland, who received NHS treatment for their bleeding disorder, were infected.  Only 251 of them are alive today.  There was a related disaster in people who received blood transfusions.  There may still be people who received a clotting factor product or a blood transfusion who have not been offered a test.  If you think this might apply to you please contact your GP straight away to arrange a test. Find out more.

In addition to the impact of the virus many people have suffered with traditional treatment regimes, particularly those involving interferon.  Serious side effect, including mental health impact, meant that many couldn’t complete treatment.  Fortunately, a new generation of Direct Acting Antiviral products have recently become available.  They are easier to take, have low levels of side effects, and higher success rates.  These advances mean that there is a new opportunity to aim to eradicate Hepatitis C.

Today, on World Hepatitis Day (July 28th), Haemophilia Scotland is taking part in the launch of NOhep, a global movement set up by the World Hepatitis Alliance to eliminate viral hepatitis by 2030. The movement is calling on people across the world to sign up to the movement and take action to make the elimination of viral hepatitis our next greatest achievement. Find out more.

There are several ways to get involved,

Haemophilia Scotland is calling on the Scottish Government to set an objective of eradicating Hepatitis C in the Scottish bleeding disorders community as an early milestone  on the road to total eradication of the virus in Scotland.  Scotland already has a world leading reputation in the battle against Hepatitis C.  Therefore, we believe we should be one of the first countries anywhere in the world to have a bleeding disorders population who that is free of the virus.

 

 

WFH Orlando 2016 Opening Ceremony

WFH Orlando 2016 Opening Cermony (crop)

The World Federation of Haemophilia (WFH) hold their incredible conference and congress every two years.  They are fantastic events which bring together patients and healthcare professionals from all over the globe.  There is no better place to find out all the latest thinking about Haemophilia and bleeding disorders.  This year it is being held in Orlando but we are particularly excited as this is the last conference before the whole show moves to Glasgow in 2018.

We are really pleased that our Honorary President, Susan Warren, has agreed to travel to Orlando and fly the flag for Haemophilia Scotland.  Susan was part of the team whose successful bid is bringing the WFH Congress to Glasgow. She is a lead volunteer on the Malawi Diagnosis Project, and she was a founder member of Haemophilia Scotland.

While she is there Susan will be encouraging people to come to Glasgow in 2018 and having some important meetings about our work with the Society of Haemophilia and Allied Disorders in Malawi.  She is also sending us updates so that you can get a flavour of what is involved and start making your plans to come to Glasgow in 2018.

She says,

The 32nd World Federation of Haemophilia Congress has now opening in a hot and humid Orlando. There are 5,500 participants registered from 125 countries.

After the opening ceremony, which was a little different this year, with panel discussions, there was a networking reception.

I was helping out on The Haemophilia Society Stand promoting the Glasgow Congress 2018.

We will give you more updates about what Susan has been getting up to on our behalf as we get them.  If you’d like to follow the conference more closely the we recommend the WFH publication The Congress Daily.  It gives you a great overview of everything which is involved in a conference like this. Susan will also be logging onto the Haemophilia Scotland Facebook Group so you can join in the discussion there.  If you are not a member of the group but would like to be please contact Dan Farthing-Sykes or Emma Black in the office.

I went on Walk RED Malawi 2016 and all I found was a castle!

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Thank you to everyone who joined us for the Extraordinary General Meeting (EGM) and Walk RED Malawi 2016 on Sunday.

Those who attend the EGM, and those who submitted proxy votes, confirmed the vote taken at the AGM. We now acknowledge our international work in our charitable objectives.

The walk itself went well too. Nobody needed a Haemophilia Scotland umbrella and everyone looked great all dressed in red.

As we walked along we talked about what is already being achieved in Malawi through our Malawi Diagnosis Project.  Our fantastic volunteers have just returned from training over 350 healthcare professional in techniques for spotting potential bleeding disorders patients.  Thanks to the project, they now know about the new Haemophilia Clinics which are opening in Malawi.  The patients they refer will have access to laboratory tests and treatment.

You can make a donation to support this extremely important work online or by text.

We’ve set up a campaign on Just Giving so that you know that all of the money you donate will go to the project.  You can also tell us to collect the gift aid for your donation.

To donate three pounds by text send MALA31 £3 to 7007.  If you’d like to give more then just change the amount.  For example, you can donate five pounds by texting MALA31 £5 to 70070.

Thank you for your support.  The money you donate really does go a long way on the ground in Malawi.

 

 

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