MDS Factsheet – for GP’s

SURVEY time

Calling all patients and their families who :

– have had a bone marrow transplant in the past

– are currently undergoing a bone marrow transplant

– are scheduled for a bone marrow transplant

The bone marrow registry organisation Anthony Nolan wants to find out more about the experiences of patients and their families going through the transplant process, and the information and support that’s available to them.

To help out please access answer the survey via the link below – takes about 15 minutes:

http://survey.opinionhealth.co.uk/uc/main/5e0d/?a=EL

They are looking for another 20 participants and would like to hear from MDS patients.  The survey is likely to stay open until Friday 16/08/13.

Your participation will help their campaigning work and the work of their patient team.

Thank you.

Do you or a close relative paint or sculpt or create other forms of art?
We’d like to hear from you please.

A group of King’s nurses, patients and local people are organising an auction of 100 artworks to celebrate 100 years of King’s in Camberwell and the rich artistic heritage of the local area.

So far they have collected 20 artworks from talented patients and staff, well-established local artists and internationally well-known artists such as Maggie Hambling. All submissions are welcome – the closing date is the end of September.

The auction is being supported by South London auction house Rosebery’s, and the full catalogue will be available on their website in the month before the auction.

You’ll be able to bid for artworks from:

– Maggie Hambling
– Janet Maguire
– Tom Leighton

Tickets will be available from October from King’s College Hospital as well as local shops and businesses.The auction will be on the 12th of December- watch this space for details of the venue!

Here is the King’s Together We Can Charity website:
http://www.togetherwecan.org.uk//kings-college-hospital/news/kings-100-artworks-auction/

If you’re an artist who would like to donate your work or you’re just interested in getting involved, please contact Joanna or Geke at
kch-tr.100artworks@nhs.net  and tell them you represent the MDS group of patients.
Do tell us at MDS UK if you are donating some art work as well please – we’ll feature your piece of art on our website.

An official poster is being finalised right now – check the website again soon.

Thank you!

Derriford Hospital in Plymouth has opened a brand new stem cell transplant unit.

Patient and MDS blogger Richard Barker has sent us some photos and a few words.

Here is also a link to the hospital website:

Plymouth hospitals – transplant unit

Cancer patients needing protective isolation will be treated and recover in state-of-the-art rooms which they have helped design, as part of a new Stem Cell Transplant Unit.

Plymouth will also be able to expand its stem cell transplant service, offering unrelated donor stem cell transplants, thanks to the multi-million investment.

Plymouth Hospitals NHS Trust is investing £2.7million in new facilities which will include 10 new single rooms for patients who need protective isolation because their immune systems are depleted due to chemotherapy treatment.

Patients with acute leukaemia or lymphoma and those undergoing stem cell transplants because of bone marrow failure need protective isolation for weeks at a time. Now they will be able to be treated and recover in private, state-of-the-art isolation rooms with full en-suite facilities.

Expanding our Service
Patients needing protective isolation include around 15 new patients per year who are diagnosed with acute leukaemia and a further 60 who need stem cell transplants, either using their own stem cells (45 patients) or those of a sibling (15 patients).

The investment and expansion will also mean that Plymouth Hospitals NHS Trust can now offer transplants using stem cells from unrelated, altruistic donors. Currently, around 15 patients per year travel to Bristol or London every year for this treatment.

Dr Hunter continued: “This is a real improvement and a real development and we are doing it in such a way that we can carry on providing services for patients whilst we create the new unit. We are starting work soon with a view to completing everything by the summer of 2013.”

From a Patient Perspective

Patient Richard Connor has bone marrow cancer. He said: “I had my first stem cell transplant in July 2008.

That gave me about 20 months of remission. Then it relapsed and I had several drug treatments. The latest lasted for about 14 months, then the myeloma came back and I’ve been treated since March with a view to having a stem cell transplant. I am having more treatment and hopefully I will walk out of here and have another period of remission.”

Richard welcomed the improvements and said: “It will be excellent. If you imagine being in isolation, you need an en-suite shower. You are trying to avoid infections and you want a shower in your own room. The idea is you are not meant to leave the room, so it stands to reason you want everything to be self-contained and with enough space.

“I am very happy with the treatment I’ve had from everyone. It’s about your life, this thing.”

Bone Marrow donations will be discussed tomorrow in parliament – 06/03/13 – at about 12.30pm – after Prime Minister Question Time.

This is tied to an Early Day Motion tabled since the 27/02/13 – suggesting that educational sessions be made available in schools for all 16-18 year olds – about how their bone marrow donation could save lives.

Here is the link to the debate:

Ten Minute Rule Motion

http://services.parliament.uk/calendar/#!/calendar/Commons/MainChamber/2013/3/6/events.html

And this is the EDM – which we encourage all MP’s to sign.
Please tell your MP about it.

http://www.parliament.uk/edm/2012-13/1126

That this House recognises that there are currently 1,600 people waiting for a life-saving bone marrow transplant in the UK; understands that the growing number of people on the bone marrow register is critical to meeting this transplant need; further understands that young people make the best bone marrow donors; supports the work of the voluntary Register and Be a Lifesaver programme run by Anthony Nolan and NHS Blood and Transplant in providing educational sessions in schools and colleges which provide information to young people about how to become a bone marrow, blood or organ donor; and calls on the Secretary of State for Education to consider the ways in which such educational sessions can be made available in every school or college in England to ensure every 16 to 18 year old understands how they can become a potential life-saver by joining the bone marrow register.

This is part of the Anthony Nolan campaign for its Register and Be a Lifesaver education programme on blood, organ, and bone marrow donation to be a compulsory part of education for 16-18 year olds.

You can view the session on Parliament TV:

http://www.parliamentlive.tv/Main/Live.aspx

Here is more background on the campaign:
Just 50% of people who need a bone marrow transplant will find a matching donor, and there are over 7,000 people currently waiting for donated organs. Increasing the number of donors in the UK will help save more lives.

On Wednesday 6 March, Labour MP Seema Malhotra will introduce Adrian’s Law (the Blood, Organ and Bone Marrow Donation (Education) Bill) under a Ten Minute Rule Motion in the House of Commons.

Seema Malhotra, MP for Feltham and Heston, says, ‘Education about blood, organ, and bone marrow donation is essential for giving young people the information and awareness to make the decision to be a donor, and enable the NHS to save more lives. Introducing this education is a vital measure for securing a long-term solution to address the donor shortage.’

‘The problem is compounded for people from ethnic minority backgrounds. A white northern European person has a 90% chance of finding a bone marrow donor. However, this drops to just 40% for people from ethnic minority backgrounds.’

The call for compulsory education for 16-18 year olds comes after impressive results from a pioneering education programme, Register and Be a Lifesaver (R&Be), run by Anthony Nolan with NHS Blood and Transplant.

R&Be is the legacy of young journalist Adrian Sudbury. Adrian Sudbury spent the last two years of his life campaigning for better education about stem cell donation. Since 2009, volunteers have spoken to almost 80,000 students about blood, organ and bone marrow donation.

Victoria Moffett, Policy and Public Affairs Manager at Anthony Nolan, says, ‘We are determined to continue Adrian’s legacy and engage with all young people about the idea of donation. We hope Members of Parliament recognise the importance of this bill in ensuring that the NHS can provide donated blood, organs and bone marrow to those who desperately need them and that they can continue to do so in the future.’

Link to Anthony Nolan page: http://www.anthonynolan.org/News/PARLIAMENT-DEBATE-EDUCATION-ON-BLOOD,-ORGAN,-AND-B.aspx?year=2013&month=03

This is connected to the fantastic campaign led for Sharon Berger – by her 2 children Caroline and Jonni Berger.
Sharon Berger still has no suitable donor – and more registration drives need to be set up all over the country to find the right match for her.
Please help by getting together with friends, students, work colleagues, school-children to set up a registration event.
We remind everyone that anyone aged 16-30 can register to donate bone marrow – through Anthony Nolan.
Anyone aged 30-50 can donate via the British Bone Marrow Registry – if they already are blood donors.

Let’s get all students to sign up!

See all details on our main page about Sharon here:  https://mdspatientsupport.org.uk/search-for-a-stem-cell-donor/

We have been alerted about an issue in Dublin – regarding an MDS patient employed by Dublin Airport Authority.

We cannot comment – as this is going through the tribunals at the moment – but we wish to share the newspaper article on our website.  We have no other information about this issue.

Here is the weblink to the Independent in Ireland:

http://www.independent.ie/irish-news/courts/seriously-ill-daa-worker-warned-he-faced-sack-29068749.html

Article published 14/02/13 – reproduced here:
A DUBLIN Airport Authority employee who informed his supervisor he was suffering from a leukaemia-related illness was told his sick leave record had better improve or else he would be sacked, a tribunal heard.

Stuart McDonnell (30, pictured) had been working as a part-time cleaner for the semi-state firm when in January 2009, after eight years’ service, he was diagnosed with a blood disorder which doctors told him was most likely leukaemia.

In the same month, he was handed a letter from his supervisor detailing how he had taken 19 sick days in 2008 and warned that they were “going to keep an eye” on him going forward.

“It scared me a bit,” he told an Employment Appeals Tribunal in Dublin.

The following day he was called to a meeting with a manager who told him that his 19 days’ sick leave was “unacceptable” and also queried “why he was sick so often”.

“I told him the doctors don’t know for sure yet but at the moment it looks like a leukaemia-type illness,” Mr McDonnell told the tribunal.

“As soon as the words ‘leukaemia-type illness’ had left my mouth he cut me right off and said: ‘If your sick leave doesn’t improve immediately I’m warning you unofficially you will be fired’.

“As soon as he had heard the significance of my illness he turned around and said that. It was traumatic. . . I felt like a child being given out to.”

Speaking on behalf of her son, Teresa McDonnell told the hearing that the DAA “knew full well that Stuart was dealing with a life-threatening illness”.

Mr McDonnell said that days later he received another letter from the DAA reiterating its warning.

“I found it to be extremely harsh based on the fact that I had disclosed the significance of my illness and would likely need to take significant sick leave,” he said.

Mr McDonnell, who currently works for the Revenue Commissioners, said that he could not afford to lose his job.

In June 2009, he was diagnosed by specialists at King’s College Hospital, London, with myelodysplastic syndrome, a malfunction of the bone marrow that can affect production of red and white blood cells.

DAA denies the claims and the constructive dismissal hearing was adjourned until a future date.

Rare Disease Day – 28th February

Check what events took place all over the world:

http://www.rarediseaseday.org/article/about-rare-disease-day

Check also the video done for the occasion:

Lord Avebury – who often blogs about his MPD myelofibrosis also asked a question in the House of Lords on the occasion of Rare Disease Day:

Lord Avebury: My Lords, I declare an interest as a sufferer from myelofibrosis, which is one of the 6,000-plus rare diseases that have been identified which affect 3.5 million people in the UK. May I ask my noble friend to comment on how the £100 million genome sequencing project is expected to contribute to the understanding of rare diseases? Secondly, will the rare diseases stakeholder forum that he announced yesterday consider the value to both patients and the NHS of care co-ordinators, which was emphasised by the NGO Rare Disease UK?

You can check the question now – and the answer as soon as it is uploaded to the Hansard:

http://www.publications.parliament.uk/pa/ld201213/ldhansrd/text/130228-0001.htm#13022861001193

More articles from Lord Avebury on this website:

http://www.libdemvoice.org/author/eric-avebury

and

http://ericavebury.blogspot.co.uk/  where he often shares his blood results.