We need YOUR help! Help ensure Gov. changes reflect needs of people affected by cancer

The Westminster Government will be changing the way new medicines are priced across the UK.

These changes could affect the type and number of drugs that are made available on the NHS. We think people with cancer should influence these decisions but we want to know what you think.

We do not think the Government has done enough to involve people with cancer in the development of this new system.

Prostate Cancer UK are working with other cancer charities, including MDS UK, to gather the views of people affected by cancer. They will share their findings with the Government so that the voice of people with cancer can help shape their plans.

Please help by filling in a short online survey now. Click the link to have your say: https://www.surveymonkey.com/s/PCUK_value_based_pricing

The deadline for participating is 1st October 2012.

For other ways to take part and for more information, visit: www.prostatecanceruk.org/valuebasedpricing

 

In 2013 the annual meeting of the European Bone Marrow Transplant Society (EBMT) will be held in London.

As part of the annual meeting, the EBMT 2013 Patient & Family Day is to be held Saturday 6th April 2013. This day provides an important opportunity for patients, donors and carers to meet with leading international transplant clinicians. A series of plenary sessions and workshops throughout the day will allow both formal and informal interactions between delegates and speakers. Patients who have had, or expect to have, a bone marrow transplant are given the opportunity to learn about the latest developments in the field, to understand how best to manage any complications and how to adjust to life after transplant. Previous and prospective stem cell donors too will have the chance to gain a deeper understanding of the importance of their donation.

Click here to fill in the online Patient Questionnaire – participation will allow patients to influence the topics covered on the EBMT 2013 Patient & Family Day.

The survey will also allow you to show your interest in attending.

Please fill out the questionnaire by 21st September if you can.

From Tuesday 25th September 2012 to  Friday 5th October 2012, King’s College Hospital in London are showcasing photographs by the award-winning photographer Ed Kashi.

The ‘Life Beyond Limits’ exhibition offers an inspirational glimpse into the lives of six individuals across the world who are living with myelodysplastic syndromes (MDS).

Click here for more information.

Visit the Life Beyond Limits site for information about the campaign.

 

 

 

 

 

 

 

 

This event is being made possible thanks to the generous support of Celgene.

 

Maverick TV are looking for paticipants for a number of short films about cancer to run during a new ground breaking fund-raiser on Channel 4 in October, called STAND UP TO CANCER. Money raised will go towards funding for cancer trials.

The films will feature in the live show and be instrumental in encouraging viewers to donate. Each 3 minute film will feature very different individuals affected by cancer and possibly their family and / or friends. The films will tell the stories of different age groups, different cancers (including rarer cancers), different impacts, both physically and emotionally, and each person or families unique way of dealing with the illness.

The main aim of each film is to demonstrate cancer can, and does, affect everyone, in one form or another. Maverick TV want the films to be surprising, unexpected and shocking but also inspiring. They will be shot in a striking, filmic way, with high end advertorial qualities.

If you are interested…

Timings are reasonably tight as Maverick TV are filming throughout September, with transmission the third week of October 2012. Those selected to have their story told will be filmed for up to 3 days; this will be flexible around health, work commitments, treatments etc. Most of the filming will be at home, or at other locations if relevant to your story.

Maverick TV have cast some of the films already, so are looking for the final few candidates – to this end, Maverick TV would like to speak to those interested by the end of August latest.

If you are interested or would like more information, call Producer Angela Arora directly on 0207 874 6659 or email a.arora@mavericktv.co.uk, leaving your name, age and telephone number and an appropriate time to call, and she will contact you.

Click here for full flyer.

 

In May 2012, we invited MDS patients and carers to take part in a Department of Health web-based survey on what matters to patients and their carers about being in hospital (see our News post). The preliminary results of the survey, ‘Hospital Inspections – Led by Patients’, have now been released.

A total of 3,153 eligible people (those that have been a patient in hospital within the past two years or were a carer) responded to the survey from a range of age groups, ethnic backgrounds and disease types. The majority of respondents were: 61 years or over (44% of respondents), Caucasian (84%) and female (63%).

The Department of Health is seeking clarity on the relative importance placed by the respondents on different aspects of the hospital environment. Respondents answered questions regarding their experiences of cleanliness of hospital areas, food quality and service in hospitals, aspects of privacy and dignity whilst in hospital, linen and other standards of the hospital environment.

To see what respondents reported as most important aspects of what makes a good hospital environment, click here for full results.

Anna Sőrman from Access Advocacy Ltd, the research body who conducted the survey on behalf of the Dept of Health, said: “The views and comments which have been gathered have made a huge contribution to the development of [a] new assessment form.  The questionnaire will be piloted in the coming weeks to ensure that it really does help to drive up standards of care, a commitment made by the Prime Minister earlier this year.”

Monday 19^th November 2012 

Mary Ward House, 5-7 Tavistock Place, London WC1H 9SN

 

 

 

The UK MDS Forum is hosting an education day in London on 19/11/12.

The UK MDS Forum are a group of clinicians and scientists from around the UK who are interested in the clinical and scientific aspects of MDS. It was established three years ago with the remit to increase the awareness of MDS through education, setting up regional MDS registries and increasing the recruitment of MDS patients to National and International trials.

This is an event for clinical staff only. Please inform your doctor or nurse!

We would like to encourage patients and members of MDS UK to inform their GP, local haematologist, or nurse about the event by taking them a copy of the programme. The programme can be downloaded here. Travel information for the venue can be downloaded here.

We appreciate your help in raising awareness of the UK MDS Forum and their work!

 

This article talks about various issues around rare conditions and the orphan drugs that are needed to treat those conditions.

It deals with the difficulty in diagnosing rare conditions, the costs of drug development, the role of pharma companies, the investment needed, the cost-effectiveness process applied and what European governments and other stake-holders need to do to sustain future availability of such drugs.

Financial Times article – Orphan Diseases

July 24th, 2012

 

Great article published in the specialist clinical journal Oncology Practice regarding the importance of Quality of Life (QOL) as perceived by patients – as opposed to physicians.

It covers the results of an internet based survey amongst myeloma patients about QOL and various levels of importance of side-effects and symptoms.

It also stresses the work done by various haematology patient support groups to highlight the difference in priorities in QOL.

This article is based on the outcome of  this years EHA Congress (Amsterdam June 2012 – European Haematology Association), and the 3rd meeting of haematology patient support groups with the EHA board.  MDS UK is represented there thanks to the international work done by the MDS Foundation.

The article can be found here:

Cancer Patients Differ With Doctors on QoL Issues – EHA Patient Advocacy Session see http://ow.ly/1Op7d8

The main interviewees are Eric Low from Myeloma UK and Jan Geissler from CML Advocates Network – two of the main members behind the Patient advocacy work undertaken at the EHA congresses, together with Lymphoma, Leukaemia, Thalassaemia and MDS patient groups.

We thank both Eric and Jan for this great interview.

For next years EHA congress in Stockholm, patient groups have been given 3 sessions to promote the benefit of cooperation between patient advocates and clinicians, researchers and pharma. This will be the 3rd year patient groups are given such an opportunity at the EHA congress.  Two years running we had been given 1 single session and presented to a packed and very keen audience of clinicians, researchers and pharma representatives each time.

We will post updates on the programme at next year’s specialist EHA congress and feedback on news – as ever.

 

Another specialist congress promoting the benefits of patient support groups is the EBMT – European Blood and Marrow Transplantation.

They have a Patient and Family Day attached to each congress.

EBMT 2013 will take place in London.
MDS patients and families are strongly encouraged to attend.

Here is the link to the website:
http://www.congrex.ch/ebmt2013/patient-family-day.html 

Further details of the programme will be uploaded there nearer the time.