HaemScotNewsletterMar200972

HAEMOPHILIA ScotlandIssue 1March 2009

GIVING VOICE TO THE SCOTTISH HAEMOPHILIA COMMUNITY

www.haemophilia.org.uk

THISISSUE

‘Haemophilia Scotland’ will represent Scottish interests

UK HELPLINE: 0800 018 6068 ~ EMAIL (Scot): [email protected]

Grampian Group having a devil of a time in Aberdeen (see page 5)

The newly elected Chair of Haemophilia Scotland, Ken Peacock

A BODY to represent the interests of people north of the border who are affected by a bleeding disorder has been established following a recent meeting of Scottish based members. The new organisation, Haemophilia Scotland, will offer a greater voice and better representation to members and supporters living in Scotland.

Earlier, on 16th July 2008, the Board of Trustees of the Haemophilia Society approved the setting up of a Scottish Management Committee to oversee the work of the organisation in Scotland. This recognised the special circumstances arising from a devolved government and a separate NHS north of the border. An inaugural meeting was subsequently held in Glasgow on 29th November 2008. Later, on 13 January 2009, office-bearers and a management committee were elected and the new body – Haemophilia Scotland – was formally established.

Haemophilia Scotland currently operates within the Haemophilia Society framework, and the committee will report to the Board of Trustees. Individual members of the Society will continue to have a direct relationship with the wider UK Haemophilia Society and the London Office.

For those who are not currently members of the Society, membership is free and is the only way for individuals to stay in direct touch with the Haemophilia Society headquarters in London and with Haemophilia Scotland.

Come along to our Gathering on 13/14 March and to our first AGM on 9th May and be part of the haemophilia movement in Scotland.

2 Welcome New HS Chairman Contact Information3 Young blood Living with an inhibitor4 & 5 Group news & events6 ‘New lease of life’ Scottish Campaign Update Marathon man7 Philip Dolan MBE Children & Families Group8 The Gathering Diary Society Contact & Web links

Registered Charity: SCO39732

Haemophilia ScotlandMarch 2009

Newsletter Contributors & Contact Details

WELCOME

AS Chairman of the new interim Management Committee of the Haemophilia Society in Scotland, now called Haemophilia Scotland, it is a pleasure to have the opportunity to introduce myself to you all.

I am a 47 year old severe haemophiliac with an inhibitor and work as a CAD draughtsman in the structural steel industry. I am separated with two children; an 18 year old daughter and a 15 year old son. I split my time between my home in Edinburgh and my partner Jill’s home in the west of Scotland.

The formation of Haemophilia Scotland represents a fresh start for the Haemophilia Society in Scotland and is an exciting step forward.

We are committed to representing the views and concerns of all of those within the bleeding disorder

Chairman: Ken PeacockVice-chairman: Karl Monsen-ElvikSecretary: Carolyn McGimpseyDeputy Secretary: Elliot Moulds

Committee Members:John PriorPhilip DolanBruce NorvalNeil Cruickshank

HaEMoPHILIa SCoTLaND Management Committee

Haemophilia Scotlandelects its first Chairman

2

Group Contact Details

I am delighted to welcome you all to this Scottish Newsletter. I hope you enjoy

it, and that it becomes a regular feature. For those of you who are not avid read-ers of HQ magazine, I have been work-ing on a two-year Development Project in Scotland since 31 October 2007. This project aims to raise awareness of hae-mophilia and the work of the Society in Scotland. We now have eight months of the project left and, whilst the previ-ous months have been busy, there are plenty more opportunities for people with a bleeding disorder in Scotland to get involved.

The biggest event is yet to come, and I hope you are able to join us at Stirling Management Centre on 13 and 14 March for ‘The Gathering’. I really do hope there is something for everyone at this residential event. Booking forms have been sent out to all members and through the home delivery service as well as being available in your Haemophilia Centre. You do not need to be a member of the Haemophilia Society to attend this event as it’s for the benefit of anyone in Scotland affected by a bleeding disorder. Book soon as places are limited.

What happens at the end of the Development Project is really up to you, the members in Scotland. In a few months time the Haemophilia Society will be con-ducting a Needs Assessment. At this time you will also be asked to evaluate the Scottish Development Project. Don’t be shy, say what you think, because this really is your chance to say what you want in Scotland.

Finally, you would not be reading this were it not for Hugh MacInnes. I would like to thank Hugh for very kindly volunteering to edit and produce this Newsletter. I think he has done a fabulous job. Thanks too to all the contributors. Do let us know what you think of the Newsletter, and whether you would like it to become a regular feature. If you are not a member of the Haemophilia Society, but would like to be sent future Newsletters or information on events taking place in Scotland, please contact the London office.

Susan WarrenScottish Development Project

community in Scotland and look forward to working with you between now and the first AGM and beyond.

Ken Peacock

PROJECT COORDINATOR:Susan WarrenMobile: 07872 899 [email protected]

COMMUNICATIONS MANAGER:Dan FarthingMobile: 07872 899 [email protected]

HAEMOPHILIA SCOTLAND:CHAIRMAN: Ken PeacockTel: 0131 449 2813

NEWSLETTER EDITOR:Hugh MacInnesTel: 01851 810262Email: [email protected]

CONTRIBUTORS THIS ISSUE:Janet & Mark HowardKirsten McAugheyBruce NorvalKay MutchIain BissettKen PeacockSusan WarrenMoreen MilneDebbie MouldsMichelle BillingtonPhilip DolanNeil CruickshankDan Farthing

GRAMPIANKay [email protected]

HIGHLANDHugh [email protected]

TAYSIDEBarclay BissettTel: 01674 673696

orMoreen MilneEmail: [email protected]

WEST OF SCOTLANDPhilip DolanTel: 0141 649 0050

YORKHILL PARENTS GROUPDebbie [email protected]

SOUTH EAST SCOTLANDKen [email protected]

We would like to say a big HELLO to some new, and some not so new, members of the Haemophilia community in Scotland

ABOVE: Congratulations to Janet and Mark Howard from Shetland on their recent addition to the fam-ily, Hillel David. Offering a helping hand are proud siblings Abigail, Esther, Ellie, Hannah and Yoel.LEFT: Also with his hands full is Jimmy McAughey, aged 86, holding grand-nephew Mason Duncan Yule, who was born on 19 August 2008. With older brother Rhys Murray Yule completing the picture, could great-uncle Jimmy and wee Mason be the oldest and youngest haemophiliacs in Scotland? The children’s mum and dad are Murray Yule and Kirsten McAughey from Lanarkshire.

Living with haemophilia or having a child with haemo-

philia can be a real challenge. But effective treatment and access to prophylaxis means that we can lead more-or-less normal lives and that young haemophiliacs can do the same things as their peers.

However, some of us are un-lucky enough to develop inhibi-tors, and this does have impli-cations for our lifestyles.

When someone develops an inhibitor it means that their body recognises Factor VIII as a foreign protein - in other words as something that should not be there. This triggers a massive immune response that effectively “mops up” any fac-tor VIII that is administered, making normal treatment ineffective and bleeds are not stopped. This is obviously a worrying situation, so what are the options?

Fortunately, alternative treat-ments are available, namely FEIBA and activated Factor VII (Novoseven). FEIBA is a plasma-derived product, while Novoseven is a recombinant product. How they work is a bit complex, but the important thing is that both products control bleeds. Over the years I have used both products but have found that Novoseven works best for me, controlling my bleeds at least as effectively as Factor VIII did.

Unfortunately, one of the draw-backs of living with an inhibitor is that prophylaxis is generally not an option. This is not really an issue for crusty old haemophiliacs like myself, but it raises real is-sues for young lads who may have been used to doing certain things while on prophylaxis – with an inhibitor you are always treating bleeds, not preventing them.

Developing an inhibitor at any age does not mean that meaningful

life comes to an end – far from it. Having my inhibitor didn’t pre-vent me from running about with my mates, walking in the hills, fishing and riding various motor-cycles over the years. I also had a great time at university (as well as managing to get my degrees). However, there are costs and benefits to every activity and it would be sensible to look at these together and decide if it is worth continuing with them, always remembering that we all need to be challenged as individuals.

To all of you young lads with in-hibitors - remember that, regard-less of cause, early treatment of your bleeds is vital. The sooner treated, the sooner stopped. So no heroics, waiting to see if it will go away. This just means longer, sorer, bleeds, as I well know.

In short, developing an inhibitor is not the end of the world, and the future will be as bright as you want it to be.

LIVING WITH AN INHIBITOR by Ken Peacock

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Around and About with the

Local Groups

ON a rather blustery January after-noon in Glasgow, the boys and girls who attend Yorkhill were

transported to Kansas City as the curtain went up on the Wizard of Oz at the Citi-zens Theatre. Twenty children and young people along with 20 adults joined in to make our first panto visit a memorable one.

In true panto fashion we had a few good fairies that made our trip extra special.

A friend of the haemophilia society, Ali-son Parson, gave us a generous donation of party bags for each child. Alison was planning on doing a sponsored 10k but had to withdraw as she is expecting a little munchkin of her own.

Another good fairy was Sister Aileen Gibson from Yorkhill Hospital, who provid-ed ice-creams for the children and a few sneaky extra ones for some of the parents. Aileen kindly arranged for the Yorkhill fund to pay for this wee treat.

I hope those families that joined us had a good afternoon out, and here’s to anoth-er panto in 2010!

Debbie Moulds (Yorkhill Parent Contact)

IT has been a busy few months in Tayside. Beginning in October, we held our AGM at Ninewells Hospital and

were pleased to be joined by Dan Farthing from Head Office. We were all delighted to meet him and to hear about various developments within the Haemophilia Society.

In November, Moreen, the group secretary, attended the DLA training day in Crieff, organised by the Scottish Development Project worker, Susan Warren. Everyone agreed that the day was very successful and a great opportunity for some of us mums to share experiences and advice.

At the end of November, the group got the opportunity to raise some funds at a Dundee Stars ice hockey match. June and Dean did the group proud and collected £180 in donations from generous hockey fans as they arrived to watch the game.

In December, it was time for our annual Christmas lunch at the Marmalade Pot in Dundee. It was difficult to believe a year had passed since the last one, but we had a good turnout and an enjoyable afternoon was had by all.

Our next event is a quiz night to be held on the 29th of January. We are fortunate to have a haematologist whose hobby is writing quizzes! It should be a good night and a chance to get the old grey matter working!

Moreen Milne, Secretary of the Tayside Group

West of Scotland

Tayside

Grampian

4

Yorkhill Group enjoying their day out at the panto

Yorkhill children at the Citizens Theatre to see the Wizard of Oz

AS a carrier and mum to two-year-old Joshua, who has severe Hae-mophilia A, I have recently taken

over as chair of the Grampian group.Joshua recently had a port fitted and

is now on prophylaxis. I can honestly say that we have so much more freedom with the port being in and we are all now cop-ing well. I also have a daughter, Lauren who is aged one and who will be tested for carrier status when she is older. I have a sixteen-year-old brother who has the dis-order, as does a seven-month-old nephew of mine.

The Grampian Group holds several meetings throughout the year to discuss objectives and plan social activities. We also purchase safety equipment for the children and fridges if required for storing factor products. Around 15 from the Group went to the Blair Drummond Day, and it was nice to meet people from other areas and put faces to names at last. It was also a good opportunity to discuss issues and share experiences with other parents and carers affected by haemophilia.

Recently, the Gibb family organised a Tabletop Sale and door-to-door collection for the group, raising £460. I would like to extend my thanks to them for achieving this great amount and to welcome them to the area.

The group also organised a Spa Day for the members and we had a good re-sponse. So much so that it would be good to continue it as an annual event as I think all who attended greatly appreciated a time-out to be pampered and relax! Many thanks to James Morgan for making the day possible and for his help in organis-ing it.

Our annual Boxing Day dip went off with a splash at 10.30am. Organised by the Lions club of Aberdeen (a local community volunteer group that is part of Lions Clubs International, the worlds largest communi-ty volunteer organisation), the event took

AS an active campaigner for justice on the issue of contaminated blood and blood products, I would like to

outline my role in the campaign over the years and encourage those affected by bleeding disorders and related matters to play an active role in the work of the hae-mophilia Society in Scotland.

On learning that I was infected with Hepatitis C, I started to ask questions and develop my understanding of the disasters we have faced. This, combined with my not insignificant ‘brass neck’, has allowed me to ensure that more of our story could be told to a wider audience.

As a member of the interim manage-ment committee of Haemophilia Scotland, I find myself hoping that my 18 years of campaigning will come to an end so that I can retire, and that this piece will be read by someone with the necessary drive to take on the issues that will emerge from the impending inquiry in Scotland. I have not been blind to the issues thrown up by the daily experience of sufferers and car-ers. But as you may understand, I have neither the time nor the strength to tackle

Highland

AFTER several years in the dol-drums the SE Group is once again up and running.

By the time that you read this the group will have been on an outing to the pan-tomime for kids (of all ages) and we will have had a ‘getting to know you’ event at Our Dynamic Earth in Edinburgh.

Your local group is your local support network but depends on people being involved. So, if you have a bleeding dis-order or a child or partner with one, why not get involved?

Our appreciation to all the staff at Ed-inburgh Haemophilia Centre who took 30 children registered at the centre and their friends to the pantomime on 18 January.

So, a big thank-you to Susan and her daughter Sara, Irma, Barry and Michele for all their efforts.

Ken Peacock

South East Scotland

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place across from the Beach Leisure Cen-tre in Aberdeen.

Around 15 people braved the icy water and the conditions, including the usual suspects: Keith England, dressed as an oil supply boat; Abi and Dorothy England, disguised as a witch and the devil, and some first-time dippers from St Margaret’s school for girls.

Their efforts were greatly appreciated by the group, and I am hoping to be able to do it again this year!

I would be happy for folk to get in touch with me if they are interested in becoming more involved with the group, or just wish say hello.

Kay Mutch

anything beyond the area of work I have spent the last 20 years of my life working on.

However, 2009 promises to be a chal-lenging if not pivotal year with, among other things: the formation of Haemo-philia Scotland’s interim management committee; the conclusion of the Archer Report; the Scottish Inquiry due to start; the Patients Rights Bill being drafted in Holyrood, and changes being made to disability benefits. There has never been a greater opportunity or need for carriers, sufferers of Haemorrhagic conditions and their families to have their say and effect positive change.

It is arguable that there will never be a satisfactory end to the 30 years of cam-paigning for those who were infected or affected by the various pathogens that were in blood products.

With inquiry reports due to be published in England and starting in Scotland, we must look towards ensuring that all the unnecessary suffering, past and present, is honoured by positive change and in-formed learning. But to balance this, we must also look to the future and the new generation of Haemorrhagic disease suf-ferers and their families who for too long have seen their services slip on the agen-da of the Society in Scotland.

So, whether it is selling a few raffle tickets or standing for election to our new management board in Scotland this May to ensure the broadest representation possible, your contribution is important.

If you are affected in any way by Haem-orrhagic disease, then I want the Haemo-philia Society in Scotland to matter to you and for you to matter to it.

Bruce Norval

Michelle Billington and Debbie Moulds from the Yorkhill Parents Group at the Blair Drummond Family Picnic Day in August 2008. Michelle and Deb-bie are both members of the recently established Children and Families Group. Pictured below are Debbie’s son, Samuel, with Michelle’s children Marco and Morgan Gray

My name is Iain Bissett, and I’m a 54-year-old who suffers from Haemophilia B – or at least I did, until I was the recipient of a liver transplant on 2nd November 2007.

I was first diagnosed with Hepatitis C in 1995. At the time I had no idea how quickly my life would change and certainly would never have imagined having a liver transplant.

My health deteriorated gradu-ally. Initially, I didn’t realise that the tiredness and muscle fatigue I was experiencing was linked to the virus.

In 1998 it was decided that I should commence with Interferon and Ribaviron combination therapy. Unfortunately, this treatment proved to be unsuccessful and so I had to stop taking it, which was very disappointing for me.

In 1999 my symptoms worsened to the extent that I underwent a biopsy. The results were as expected, but the damage at this stage wasn’t too severe. As there was no treatment available for me, I just had to carry on as before.

Over the next couple of years, my health continued to deteriorate. By 2001 I was unable to work any more as I was suffering from chronic pain and fatigue. I didn’t sleep well due to pain in my arms and legs, and when I did exert myself I paid for it by being wiped out for days afterwards.

One man’s story of courage and hope following transplant surgeryNew Lease of Life

6

Over the next few years, the dete-rioration continued. I made every effort to keep active, get out and about and be sociable. At times, people would have had no idea I was so ill, but as my health worsened, the outward signs became

more obvious to others, but not to me. My speech was often slurred; I lost my train of thought easily and repeated myself.

By December 2006, my family had become very concerned and it was decid-ed that I would see the liver specialist at Ninewells Hospital to discuss my options. It was made clear that my only choice

was a transplant. I didn’t make the decision immediately: I knew there were huge risks in going through a transplant operation, and I knew there would be no guarantee that a new liver would last very long either. I spoke to another man in the

area who had undergone a transplant. His story really helped me: he had his life back and so could I.

I was assessed at ERI in June 2007 and put on the transplant list in July. But at that time no one could have predicted how rapidly my health would decrease.

In late October I became very unwell and was admitted to Ninewells Hospital. The news wasn’t good: I had an infection and was taken off the transplant list. Then, on Tuesday 30th October, I went back on the list and on the evening of Thursday 1st November I received the call that changed my life.

Within two days of having the operation I was feeling better than I had in months. I made a very quick recovery and have continued to keep good health. That said, I never forget

that I still have the virus and I’m seen regularly at Edinburgh to keep an eye on things. But, a year on, I am working again and able to enjoy family life with my wife, grown up children and grand-son.

I thought that having a liver trans-plant would be the worst-case scenario – it turned out to be the best.

Marathon man Stephen McLay (2nd right, back row) participating in 100-mile Sahara trek during 2007

Scottish Campaign Update by Dan Farthing

On the 5th of February 2008 Lord MacKay issued a historic court ruling saying that the Scottish

Government had to conduct an investigation to fulfil the state’s obligation to uphold the right to life (Article 2 of the European Convention on Human Rights). In response the Scottish Government has announced that it will hold an Inquiry in Scotland (in accordance with a pledge in the last SNP manifesto). The Inquiry will be headed by Lord Penrose who some members may remember headed the Public Inquiry into Equitable Life.

As much of the evidence dates from before devolution and because ‘the state’ in European law refers to the

UK rather than Scotland we have argued for a UK wide Inquiry. However, the Scottish Government has decided to continue with an Inquiry in Scotland that will not be able to insist on evidence or witnesses from other parts of the UK. The Inquiry is starting work by reviewing the available documentation.

The Haemophilia Society and Haemophilia Scotland are committed to making the most of the opportunity presented by the Scottish Inquiry. We will keep you informed about how to give evidence as soon as we know. If you would like to help by being a local contact for your local MSPs or by talking to the media please get in touch.

Stephen McLay, a patient from Edinburgh Haemophilia Centre, will be running the Edinburgh Marathon on 31 May 2009 in aid of Haemophilia Scotland. Stephen, the Operations Manager at the Mercure Point Hotel in Edinburgh, is no stranger to a challenge. In 2007, he completed a 100-mile trek for charity through the Sahara Desert. Stephen has always loved sport and played rugby at school. He has calmed down now that he is married with a son, 6-month-old Jack, and these days only plays football three times a week as well as work-outs at the gym. Please support Stephen by turning up to cheer him on the day, or to sponsor him. Details will be on the Haemophilia Society web site very soon.

Campaigner on Haemophiliaissues receives MBE

Philip Dolan MBE at Buckingham Palace

7

Kay Mutch, Karen Hughes, Carolyn McGimpsey, Moreen Milne and Michelle Billington attending the DLA for Chil-dren Training Day at Crieff in November 2008. This was also the inaugural meeting of the Scottish Children and Families Group, set up and supported by the Scottish Development Project

Congratulations are extended to Philip Dolan from Glasgow who attended an investiture at Buckingham Palace in December where he received a well-de-served MBE for his voluntary services to Haemophilia in Scotland. His award had earlier been announced in the Queen’s Birthday Honours List in June 2008.

Philip, who has Haemophilia and Hepatitis C, has been actively involved with the Haemophilia Society for over 30 years and served as a Trustee and as Vice-Chairman. He is currently a Trustee, Chairman of the West of Scot-land Local Group and a member of the new Haemophilia Scotland committee.

After many years of chairing the Scottish Haemophilia Groups Forum and campaigning relentlessly for a formal inquiry into why and how people with haemophilia and bleeding disorders were infected with hepatitis and HIV, the Minister for Health and Wellbeing, Nicola Sturgeon, agreed in August 2007 to hold an Independent Judicial Inquiry.

Commenting on the Independent Judicial Inquiry, Philip said: ”I am firmly of the belief that the Inquiry should have the power to call for evidence from witnesses employed within UK institutions and government departments, in-cluding the Department of Health. This would include it having the authority to require witnesses and bodies to produce all and any relevant documents that they may hold. Only under such terms will the haemophilia community feel reassured that the Inquiry will have the power it requires to get at the truth.”

The most frequent request I have received in the past 14 months has been for information on DLA for Children. I quickly realised that it was not enough to hand out the link to our website’s information page and refer people to our helpline, or hand out a set of notes on how to fill out the form. Parents want to speak to other parents about their experiences.

As a parent of a teenager with haemophilia myself, I know all too well about being confronted with the DLA form for the first time. It was a difficult time, not least because the form is so difficult to fill out for a child with haemophilia,

Children and Families Groupbecause you as a parent are trying to be as positive as possible about what your child CAN do, rather than what they CAN’T. For this reason, I decided to hold a training day on how to fill out the form for representatives from all the areas where there is a Haemophilia Centre in Scotland. These volunteers would then be able to offer peer support to families within their Local Group.

At that training Day, and as a result of the overwhelming success of the Family Day last August, where 115 parents and children from all over Scotland enjoyed a fun packed day and picnic at Blair

Drummond Safari Park, we decided to form a group that would organise an annual Family Day.

Look out for information on this year’s Family Day/Weekend, a Children’s Activity Holiday and a trip to Paris for youths organised by the French Haemophilia Association.

Contact me if you want to find out more about the Children and Families Group or for peer support on DLA for Children.

Susan WarrenScottish Development Project

8

The Gathering 2009Friday 13th March 4pm

toSaturday 14th March 4pm

StirlingManagement

CentreUniversity of Stirling campus

For details about the centre and how to get there:

http://www.smc.stir.ac.uk/content/

SCOTLAND CONTACT DETAILSSusan WarrenScottish Development Project,The Haemophilia Society,PO Box 5729, Inverness IV1 9BLText or phone: 07872 899 887Email: [email protected]

Haemophilia ScotlandChair, Ken PeacockEmail: [email protected]: 0131 449 2813

A full PDF copy of The Gathering leaflet containing details about the event is available on the Haemophilia Scotland pages on the Society’s website: www.haemophilia.org.uk

UK CONTACT DETAILSThe Haemophilia Society1st Floor, Petersham House57a Hatton GardenLondon EC1N 8JGTel: 020 7831 1020Fax: 020 7405 4824Email: [email protected]

www.haemophilia.org.uk ~ www.inhibitorsupportgroup.org

www.womenbleedtoo.org.uk ~ www.youngbloods.org.uk

UK Helpline: 0800 018 6068

Haemophilia Scotland DiaryMarch 6th - 8th: MFT Partners Weekend in LondonMarch 13th - 14th: The Gathering, StirlingMarch 15th: The Adidas Half Marathon at Silverstone April 17th: World Haemophilia DayMay 9th: Haemophilia Scotland AGM @ The Mercure Point Hotel, EdinburghMay 31st: Edinburgh Marathon (see page 6)

© The Haemophilia Society (Scottish Development Project)Opinions expressed in this newsletter do not necessarily reflect those of the Haemophilia Society or Haemophilia Scotland. We welcome non-commercial reproduction of articles on the understanding that acknowledgement is made of the ‘Haemophilia Scotland’ newsletter as a source

A residential event for people with haemophilia, vWD & other bleeding disorders living in Scotland

Please contact Susan Warren (details below) if you have specific queries or

require additional information regarding the event.

Booking forms should be returned by 28 February. After that time please contact Susan directly.

The Haemophilia Community Online

To avoid disappointment, please book early

HAEMOPHILIASCOTLAND

The Scottish Development Projectis sponsored byThe Scottish GovernmentRegistered as a charity inScotland No. SCO39732

HaemScotNewsletterMar200972

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