Left to right: Angela, Susan, Bill, Nikki and Dan raising hands for rare diseases at the February meeting of the Haemophilia Scotland Board of Trustees.
At our Board Meeting on Wednesday we decided to show our support for Rare Diseases Day by taking part in the worldwide campaign for Rare Diseases Day to get people to raise or join hands for rare diseases.
This year’s Rare Diseases Day Reception at the Scottish Parliament was particularly successful and we were very pleased to be able to take part.
Haemophilia Scotland works with individuals and families with a wide range of bleeding disorders – all of them are rare or ultra-rare conditions. Although there are less than 2,500 people in Scotland with a diagnosed bleeding disorder there are an estimated 300,000 people with one of the 6,000 to 8,000 recognised rare diseases. So, we maybe small on our own but together we have a very load voice indeed.
Now that a UK Rare Diseases Strategy has been agreed and the Scottish Rare Diseases Implementation Plan, It’s not rare to have a rare disease, is in place the focus this year will be on delivering real improvements for people with rare diseases in Scotland.
Dan receives the cheque from the LEAFA President
Last night Dan was at the monthly meeting of the Lothian and Edinburgh Amateur Football Association (LEAFA) to receive and enormously generous cheque. Their £1,100 will make a huge difference to what we can do over the coming year. We hope to use the money to help people with bleeding disorders get active and stay active.
LEAFA made two donations on the night and we shared the honour with The Thistle Foundation who help people with long term conditions stay active.
We are extremely grateful to Alan who put us forward for the donation. Lots of employers and organisations have charitable funds which only staff or members can suggest charities for. It is a great way of supporting our work.
It is very important to us to link up with good community organisations like the LEAFA and we are deeply honoured to have their support.
The Garden Lobby of the Scottish Parliament was packed for the 2015 Rare Diseases Day Scottish Parliament Reception.
Susan, Carolyn and Dan attended an excellent Rare Diseases Day Reception in the Scottish Parliament last night. The Garden Lobby was packed with MSPs, patients, carers, and healthcare professionals. Lots of patient organisations like ours were there and displaying posters about their work. The event was also well attended by representatives from both the Scottish Government and pharmaceutical companies who make products fro rare diseases.
A condition is classed are rare if less than 1 in every 2,000 people are effected. That means that all bleeding disorders are rare. There are up to 8,000 identified rare conditions with more being identified all the time. The Genetic Alliance estimates that there are 300,000 people with a rare condition in Scotland.
The Scottish Government has signed up to a single, UK-wide, Rare Diseases Strategy and has an implementation plan which sets out what that will mean in Scotland. There is also an oversight group to make sure that the plan leads to real changes on the ground.
Shona Robison MSP, Cabinet Secretary for Health, Wellbeing and Sport, told the event about her view of the need for patients to have good information and support. She also highlighted the importance of patient groups to the work of the Scottish Medicines Consortium.
Image © Scottish Parliamentary Corporate Body – 2012. Licensed under the Open Scottish Parliament Licence v1.0.
Thank you to everyone who has been contacting their local MSPs and asking them to sign Richard Lyle MSP’s motion S4M-12139 on The Penrose Inquiry Final Report.
Several MSPs have written to us to thank us for raising the issue with them which just goes to show the value in getting in touch with them now.
Six more MSPs have signed the motion today bringing our running total up to 44. So thank you to John Pentland MSP, Gavin Brown MSP, David Stewart MSP, Ruth Davidson MSP, Paul Martin MSP, and Lewis Macdonald MSP. However, there is still a long way to go and there are lots of MSPs who haven’t signed.
If you haven’t already done so please take a few minutes to check if all your MSPs have signed and to get in touch with those who haven’t.
It is really important we keep getting strong support from all the parties.
Support by Party
SNP: 17 of 42 (40%)
Scottish Labour: 15 of 38 (39%)
Scottish Conservative: 7 of 15 (47%)
Scottish Lib Dem: 3 of 5 (60%)
Scottish Greens: 0 of 2 (0%)
Independent: 2 of 3 (67%)
No Party Affiliation: 0 of 1 (0%)
*There is a convention that Ministers don’t usually sign motions like this. So, although there are 65 SNP MSPs, we have used the figure for the number of backbench SNP MSPs.
Are you ready for Rare Diseases Day?
Just in case you needed a reminder of what it is all about a new video has been released.
If you are inspired to get involved then you can Raise & Join Hands for Rare Diseases Day. Everyone is been asked to upload photos of themselves raising and joining hands to symbolise people with all sorts of conditions from all over the work coming together to raise awareness of rare diseases.
If you can get to Edinburgh on the evening of the 24th Feb then there are still tickets left for the Rare Diseases Day Reception at the Scottish Parliament. The event is free and is in the prestigious Garden Lobby. However, you’ll have to hurray, the organisers are asking for everyone to register before the end of Feb 17th. As we write that is less than 24hrs!
Dr King saying goodbye to two of his biggest fans.
Dr Derek King’s hard work in Aberdeen is coming to an end. He held his last clinic this week and it triggered a small flood of messages thanking him for all his hard work. We thought it would be nice to share them here. We think it really demonstrates how important the professionals who provide such a fantastic service in Scottish Haemophilia Centres really are.
Here are just some of the comments.
Jackie and John say,
Great guy looked after my two boys well all through the 80’s and early 90’s had many encounters with him both day and night . All the very best to him for a long and happy retirement!
Dr King will be missed. I hope Mrs King enjoys seeing a lot more of him. All the best for a long and happy retirement.
He’ll be a big miss! X
He looked after my fiancé, Craig Long in the 70s and 80s too. He will be a big miss. All the best for a well deserved retirement.
He will be missed at royal Aberdeen children’s hospital.
Would like to say happy retirement to Dr Derek king haematologist at ari Aberdeen wishing you all the best and thank you for all your help.
This man saved my life on several occasions the first being six days old iv been a patient with him for the rest of my life 27 years he’s done so much for me and to see him go its devastating I owe him everything and more thanks so much for my life and God bless
If you’d like to add your best wishes to this page, please use the comments box below.
This is what the new Edinburgh Sick Kids will look like.
Today (13.02.15) NHS Lothian has reached “Financial Close” for the project to build the new Royal Hospital for Sick Children at the Little France Campus.
This means that all the project related financial transactions have been completed and is a good sign that the project is proceeding well. Construction works will start on site in the next week.
The project team are now looking forward to the new facilities taking shape over the coming years and have thanked everyone involved in the project; from staff, patients and their families to partner boards, charities and other third sector organisations for helping to get this far.
This is something that Haemophilia Scotland members have played an active part in. In particular by attending our meeting with a representative of the project team and feeding in a wide range of practical idea.
Bill Wright trying to attend the SMC meeting on ledipasvir-sofosbuvir (Harvoni)
Yesterday, the Scottish Medicines Consortium (SMC) met to discuss a range of newly licensed drugs. Haemophilia Scotland had been invited along because we made a formal patient submission in support of the new Hepatitis C combined therapy from Gilead Sciences, ledipasvir-sofosbuvir (Harvoni). There were also submissions from The Hepatitis C Trust and Hepatitis Scotland. A summary of all three submissions was read to the meeting and highlighted the need for a single pill treatment which avoided the need for interferon. There were some heart-rending quotes from patients about the horrendous impact of interferon side effects and long term damage.
We won’t know if if the application is successful for a month but we will report the outcome as soon as we know.
It is clear that the all the new treatments coming through at the moment are going to be used differently for different genotypes. If you don’t know what genotype you are now is a good time to ask your doctor so that you can tell which of the new treatments might be most useful to you.
Bill Wright and Dan Farthing-Sykes attended the meeting although Bill found himself trapped in a stuck lift for 40 minutes with half the other people their to observe the meeting! Thankfully he was rescued in time to hear the discussion and none the worse for the experience. We hope that this isn’t a omen and that there will be no delays in getting these new treatments to those who desperately need them.
Image © Scottish Parliamentary Corporate Body – 2012. Licensed under the Open Scottish Parliament Licence v1.0.
Haemophilia Scotland is calling for a debate in the Scottish Parliament shortly after the Penrose Inquiry Final Report is published on the 25th March.
MSPs have been working with those affected since the Scottish Parliament opened in 1999. Now we have finally had an Inquiry MSPs must be given a chance to respond to its findings.
Richard Lyle MSP has been a great friend to us and the campaign in the Scottish Parliament. He has tabled a motion noting our call for a debate. We’d like to get as many MSPs as possible to sign.
The motion in full
Motion S4M-12139: Richard Lyle, Central Scotland, Scottish National Party, Date Lodged: 22/01/2015
Penrose Inquiry Final Report
That the Parliament welcomes the announcement by the Scottish Public Inquiry into Hepatitis C/HIV acquired infection from NHS treatment in Scotland with blood and blood products (Penrose Inquiry) that it will publish its final report on 25 March 2015; notes the commitment by the Cabinet Secretary for Health and Wellbeing on 3 March 2011 that there would be “a further review of Stage 1 payments from the Skipton Fund and the implementation of the new measures announced today will be reviewed when the final report (and any recommendations) of the Penrose Inquiry, are considered”, and further notes the desire of Haemophilia Scotland that the Scottish Government debate the findings of the Penrose Inquiry as soon as possible after the publication of the report.
We’ve already emailed all the MSPs who are eligible to sign but now we need your help. The best way to get an MSP to do something is for someone they represent to ask them to do it. We suggest using the very helpful website writetothem.com to get in touch with your MSPs and ask them to sign the motion. Remember to contact both your constituency MSP and your regional list MSPs. The list below shows if they have signed already. If they have then it would be fantastic if you email them to thank them – that way they know that this issue is important to you. If you contact an MSP and they refuse to sign please let us know. You don’t need to send a long email but it works best if you tell them how the contaminated blood issue affects you.
The MSPs who have signed
Richard Lyle MSP (SNP) – Central Scotland
Christine Grahame MSP (SNP) – Midlothian South, Tweeddale and Lauderdale
Rhoda Grant MSP (Scotish Labour) – Highlands and Islands
Tavish Scott MSP (Scottish Lib Dem) – Shetland
John Mason MSP (SNP) – Glasgow Shettleston
David Torrance MSP (SNP) – Kirkcaldy
Dave Thompson MSP (SNP) – Skye, Lochaber and Badenoch
Rob Gibson MSP (SNP) – Caithness, Sutherland and Ross
Neil Findlay MSP (Scottish Labour) – Lothian
Kenneth Gibson MSP (SNP) – Cunninghame North
Colin Beattie MSP (SNP) – Midlothian North and Musselburgh
Malcolm Chisholm MSP (Scottish Labour) – Edinburgh Northern and Leith
Duncan McNeil MSP (Scottish Labour) – Greenock and Inverclyde
Jackie Baillie MSP (Scottish Labour) – Dumbarton
Mike MacKenzie MSP (SNP) – Highlands and Islands
Dennis Robertson MSP (SNP) – Aberdeenshire West
Adam Ingram MSP (SNP) – Carrick, Cumnock and Doon Valley
Jackson Carlaw MSP (Scottish Conservative) – West Scotland
Alison McInnes MSP (Scottish Lib Dem) – North East Scotland
Nanette Milne MSP (Scottish Conservatives) –
Sandra White MSP (SNP) – Glasgow Kelvin
Stuart McMillan MSP (SNP) – West Scotland
Jean Urquhart MSP (Ind) – Highlands and Islands
Siobhan McMahon MSP (Scottish Labour) – Central Scotland
Elaine Murray MSP (Scottish Labour) – Dumfriesshire
Anne McTaggart MSP (Scottish Labour) – Glasgow
Jim Hume MSP (Scottish Lib Dem) – South Scotland
Johann Lamont MSP (Scottish Labour) – Glasgow Pollok
Kevin Stewart MSP (SNP) – Aberdeen Central