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Question Prompt List to help meet the information needs of MDS patients

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What do UK MDS patients say about the information they receive at diagnosis?

According to UK MDS Survey:

  • Over half of respondents agree that their needs for verbal information on MDS have been met sufficiently. For the remaining 46% the provision of verbal information could be improved on.
  • Usefulness ratings of verbal information provided vary across patients.
  • Over one third of respondents have not been provided with any written information on MDS
  • Majority of those who received the written information, rate it as highly useful

provision of verbal information

 

usefulness of verbal information

 

provision of written information

usefulness of written information

 

What can you do to ensure you receive the information you need?

There are many different reasons why MDS patients may not be fully satisfied with the information they receive on MDS, such as the complexity of their diagnosis, unfamiliarity with the condition or medical terminology, short consultation time or information overload. Associated emotions of shock, uncertainty and feeling overwhelmed may also get in a way.

Patient also differ from one another in terms of the amount and detail of the information they want and at what stage.

One way to ensure you receive the information you need, and when you need it, is to ask questions that are relevant and matter to you. However, putting your concerns into words and finding the right questions to ask isn’t always easy.

To help MDS patients gain greater control over the flow of information in consultations, French and Australian researchers put together a list of over 50 questions, which were found to matter most to MDS patients and their family members in those countries. Please find out more about this research project HERE.

Using this list could help you decide what questions to ask your haematologist at your next consultation to better understand your diagnosis, treatments and consequently to make more informed decisions about your health care.

Please, see the QUESTION PROMPT LIST below to identify the questions that matter to you. Write them down together with any other questions that you have. Finally, if you can, bring someone with you to the consultation to take notes and to help you make sense of what’s been discussed.

Remember, our office is here to provide further general information on MDS and services that can help you. We don’t give clinical advice, as only your clinical team can do that, but if there is anything you would like to discuss with us, please don’t hesitate to call us on 020 7733 7558.

 

Question Prompt List for MDS:

Diagnosis
How common is my MDS? How many people get it?
Is my MDS a cancer?
What increases the risk of developing MDS?
Are other members of my family at risk of developing MDS?
What is anaemia?

Tests
Do I need any further tests?
What will more tests tell us?
Are the tests performed here?
Will I need a bone marrow biopsy?
When will I get the results?
How will I get the results (over the phone, at the next appointment, etc.)?
Can you explain my pathology report (laboratory test results) to me?
What follow-up tests will I need, and how often will I need them?

Prognosis and evolution
How bad is this MDS?
How high is the risk that my illness will develop into leukaemia?
What symptoms will the MDS cause?
Will the treatment cure the MDS or just control it and manage symptoms?
How long do people with my type of MDS usually live?
Is the treatment going to improve my chances of longer survival?
How likely is it that the treatment will improve my symptoms?
Is it worth going through treatment?
Will the treatment or illness reduce my sexual drive?
Is there anything that I can do to help myself? E.g. diet, work, exercise?
If I get new symptoms or side effects or existing ones worsen, what should I do?

Treatment options
Is it necessary to have treatment right now?
Do I have a choice of treatments?
What are the pros and cons of each treatment option?
What can I expect if I decide not to have treatment?
How much time do I have to think about this?
What is your opinion about the best treatment for me?
Will I need chemotherapy?
Will I need a bone marrow transplant?
Will I need any additional treatment after this?

Treatment plan
What is the treatment schedule, e.g. how many treatments will I have, how often, and for how long will I have treatment?
Where will I have the treatment?
Do I need someone to come with me?
What are the do’s and don’ts while having treatment?
What are the side effects?
Will I lose my hair?
Are there long-term side effects from the treatment?

Clinical trials
What are clinical trials?
Are there any clinical trials that might be relevant for me?
Will I be treated any differently if I enrol in a trial?

The team
Who will be coordinating my overall treatment and follow-up care?
Whom should I call with questions or concerns during non-business hours?

Support
Where can I find more information about my MDS? E.g. its treatment, or clinical trials?
Are there any complementary therapies that you believe may be helpful?
Are there any complementary therapies that would be bad for me?
Is there someone I can talk to who has been through this treatment?
Are there services/support groups that can help me and my family deal with this illness?
Will I be able to work, exercise, and perform my usual activities?
Will I be able to eat as usual?
Can you recommend a social worker to help me find support services?

 

What MDS UK is doing to improve the situation?

Haematologist's ability to effective identify and meet the information needs of their patients can also be enhanced through the Doctor-Patient communication skills training. Currently, it is recognised that relatively little time is dedicated to building on such crucial skills in medical education. MDS UK is supporting the development of the new training opportunities for haematologists and European Haematology Association (EHA) has shown some interest in this area. Together with other patient organisations, MDS UK is keen to collaborate with EHA on a project that could improve the current matters and lead to improvements in patient satisfaction with the information they receive.

The topic of Doctor-Patient communication is particularly relevant in UK, considering the heavy pressure on the NHS and the difficult circumstances that staff work in, when consultations may be shorter than planned. Advanced communication training skills for haematologists could improve this situation for both, patients and physicians by maximising time and efforts. Furthermore, as patients and their families learn more about their health problems on-line, it needs to be revised how this information is discussed with physicians.

We'll keep you informed on the progress in this area.

100 Q&A book on MDS – revised edition

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100 Q&A book on MDS – revised edition

WP_20150728_009We have the latest revised edition of the really helpful 100 Questions & Answers book on MDS available from our office – free of charge to patients.

Some of you may have been given the initial 2008 edition, which we distributed a few years ago – and was extremely popular amongst our members.

For those of you who don’t know it – this is a patient friendly book on MDS, providing detailed information on several aspects of MDS, including chapters on :

• What is MDS?
• Is it a cancer?
• How is MDS diagnosed?
• What’s the best treatment for me?

The latest version was published in July 2015 and includes the revised MDS prognostic score – IPSS-R.

The book is fully endorsed by MDS experts, the MDS Foundation, the MDS Alliance, and or course MDS UK Patient Support Group.

Please note, the 100 Q&A book on MDS is a publication written for a USA patient audience. Some of the drugs may not yet be available in the UK/Europe and some of the measurements for blood counts may differ.  Please contact us if you if you have any queries.

MDS Patient Support

FOR UP-TO-DATE INFORMATION TAILORED TO THE UK AUDIENCE YOU CAN DOWNLOAD NOW A COPY OF OUR 2019 MDS PATIENT HANDBOOK. CLICK HERE TO DOWNLOAD

Display copies for your hospital

We will provide a display copy at all major hospitals, alongside our leaflets and newsletters.  Please let us know if you’d like to have a display copy for your hospital – so that more patients can take advantage of the information.

As a not for profit organisation, MDS UK was very kindly given a price discount by the publishers – Jones & Bartlett Learning – for which we are extremely grateful!
As we  are offering the booklet for free to patients, we still have to raise some funds to purchase further copies.

If you are able to help make this booklet available to more patients, please consider donating towards this project via this Virgin Money Giving page.

Survey in Europe – Measuring Quality of Life

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London School of Economics Survey about how quality of life is measured and reported in Health Technology Assessments (HTA)

28/05/15

Another survey for patients and carers to take part.

HTA organisations, such as for example NICE (National Institute for Clinical Health and Excellence) mostly use a questionnaire called the EQ-5D to measure the impact of an illness.  From our experience with MDS patients, we have found this EQ-5D questionnaire inadequate to reflect the various issues faced by our group of patients.  This survey is an opportunity to test and evaluate this widely used questionnaire.

 

TV programme on rare diseases

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TigressProdblackTigress Productions looking for volunteers for programme on rare diseases – 28/05/15

We have been contacted by a TV production company – Tigress Productions – who are looking for patients with a rare disorder – and had problems getting diagnosed.
MDS would be ideally suited for this, as many patients often take a while to be diagnosed, despite odd blood results or symptoms.
If you are interested in taking part, and would be willing to talk about your diagnosis experience on camera, please get in touch with the production team.
They are looking for up to 3 people for this documentary.

Here are further details about the programme:

Tigress Productions has just started to produce a new six part series for a terrestrial broadcaster with the working title ‘Medical Mysteries’.  Each programme will follow the personal journeys of people who have suffered from or are in the process of trying to diagnose/treat a medical mystery.

The aim of the series is to raise awareness about lesser known ailments, showcase revolutionary new treatments, and also show our audience in detail how the diagnosis process works – often patients are left wondering why their GP has taken a certain course of action; rare conditions offer us the opportunity to follow a doctor thought process from beginning to end.

The mystery doesn’t have to be that mysterious – it just has to pose a specialist with a number of options in terms of finding a diagnosis.  A key aspect of this programme will be the detective story – how a consultant or GP have interpreted the symptoms, the tests that they have chosen and why.

Tigress Productions would like to speak to people with medical mystery experiences for a new TV documentary series.

Please call 0117 933 5654/ 0117 933 5609

or email medical@tigressproductions.co.uk  for more information

A bit about us; Tigress Productions, part of the Endemol Group, are producers of inserts of The One Show (BBC1) and other shows as Winter Viruses and How To Beat Them (BBC2) and Africa 2013: Countdown to the Rains (BBC2).

https://www.tigressproductions.co.uk

EHA SWG “Symptoms and Quality of Life” Survey – please take part!

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EHA SWG Quality of Life

FOR THE ATTENTION OF MDS PATIENTS

Please find below information about the new and exciting research project in quality of life of people suffering from haematological malignancies. Please help ensure MDS patients are sufficiently represented and take part as soon as possible, the results are needed very soon!

 

“The European Haematology Association Scientific Working Group (EHA-SWG) ‘Symptoms and Quality of Life’, is undertaking a study to investigate the symptoms and impacts associated with haematological malignancies as well as their treatments. In addition, the information collected will be used to develop a novel questionnaire to measure symptoms and quality of life in haematological malignancies such as MDS. It is envisaged that this study will lead to a better understanding of the experience and needs of patients in relation to their illness in routine clinical practice. Further, this offers an opportunity to involve patients in treatment decision-making more systematically, overall leading to improved care for patients with haematological malignancies.

This study has already received ethics approval by the NRES Committee South West – Central Bristol. Undertaking the study requires gathering information from individuals with haematological malignancies such as MDS, on their experiences of living with their condition. As such, I would like to invite you to take part in this study. Before you can make up your mind on whether to take part, it is important for you to understand why this research is being done and what it will involve. Please take time to read the information sheet (click here to see) provided. We cannot promise that the study will help you directly, but the information that we get from this study may help improve the care provided to other patients with your condition. This may be completed on several sittings.

In brief, your participation in this study will not involve any clinic visits. You will be asked to complete an online survey (with mostly open ended questions), which requires 45 minutes to 1 hour to complete. The survey includes questions about symptoms and impacts you have experienced as a result of your condition.

All information you will provide will be treated as confidential. Results of analysis of all information collected will be presented at international scientific conferences and published in scientific journals. Such results will not include your name or any other personal information.

The online survey can be accessed by visiting the following website: https://surveys.eu.qualtrics.com/SE/?SID=SV_bxba7sVJGiufnwh

If you have any questions regarding the survey, please contact Paul on 07768529783 or qol@eha-swg.com or Prof Sam Salek on 07763574022.

Yours faithfully”

Paul Kamudoni
Study Coordinator
EHA-SWG “Symptoms and Quality of Life”
106 Shepherd’s Bush Road
W6 7PD
London

New Deputy Chairman at MDS UK

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MDS UK has a new deputy chairman – 21/05/15

3marathons-mdspicWe are very happy to announce the election of Russell Cook as a new Deputy Chairman for MDS UK.
Russell has been a Committee Member since 2014, then Trustee and Director since early 2015.

Russell had a life-saving stem cell transplant 3 years ago, to treat MDS – Myelodysplastic Syndromes.  The stem cell donor was his son Luke. Russell has since ran several marathons and organised several brilliant fundraising events for MDS UK.

We very much welcome him in his new role, and look forward to continued work with him.
You can read more about Russell on our Committee webpage
And on our Patient story page.

John TaylorcvsummaryJohn Taylor – who was our Deputy Chair to date has stepped down from the role due to health reasons – but will remain on the Committee as a trustee, in an advisory capacity due to his in-depth knowledge of the Charity Commission regulations.
We take this opportunity to thank John for his excellent work – and are most grateful for his continued guidance and advice going forward.
More information on John Taylor here

 

RT-Mail articlecropOur current Chairman – Rodney Taylor – is continuing in his role.  He is gradually recovering from the stem cell transplant he received in July 2014.
As MDS patients will know – recovery from a stem cell transplant is a slow and often very tiring process.  Rodney is therefore stepping back slightly and temporarily, whilst Russell will cover the work in his new role of deputy chairman.
We wish Rodney continued best wishes with the recovery – and hope to welcome him back very soon.

More information on Rodney on our Committee page – as well as on our treatment information page – under azacitidine – which he received for over 4 years – until he stopped responding to this drug and needed to have the stem cell transplant.  Read here.

 

MDS UK is also calling for new volunteer trustees.

If you are interested in applying for such a post – please check the following link in the first instance:  Trustee role – What’s involved

MDS UK would like to hear from you, in particular if you are an MDS patient yourself, or connected to an MDS patient in some way.
Please contact us by email or letter, explaining why you wish to be considered as a trustee and how your skills or experience may benefit the charity.
We may then contact you by phone and request relevant references.

Please email: swintrich@mds-foundation.org

Or write to:
Sophie Wintrich
MDS UK Patient Support Group
Haematology – Bessemer Wing
King’s College Hospital
London SE5 9RS

We are also looking for a Newsletter Editor

If you have good knowledge of MDS, and/or the healthcare industry, and enjoy proof-reading – we would like to hear from you.
Our newsletter goes out twice a year to all our members and most of the haematology departments in the country.
See all our Newsletter here.

Chris Dugmore-Essex GroupOur current Newsletter Editor – Chris Dugmore – is stepping down – as she is about to become a Grandmother twice over.
Chris is staying on as a Committee Member however – and of course as coordinator of our Essex MDS patient group.

We’d like to thank her profusely for her fantastic work with the last 5 newsletters.  We regularly have great feedback from patients, carers and staff – thanks to her great input.
We wish her all the best in her Grandma role and hope all goes extremely well with both births!

Please email: swintrich@mds-foundation.org

 

 

International Clinical Trials Day 2015 – 20th May

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Each year, the International Clinical Trials Day, is celebrated around the world on or near 20th May to commemorate the anniversary of what is considered the first clinical trial – conducted by James Lind, a Scottish naval surgeon, in 1747 on the deadly disease scurvy.

This day provides a focal point for international communication events, meetings, debates, and celebrations of clinical research, which contribute to development of new and more effective treatments, ways of looking after patients and keeping people healthy.

Every year a significant number of MDS patients take part in clinical research to help experts evaluate the latest treatments for MDS and to help other patients in future. Often, research participation allows MDS patients access to potentially beneficial treatments, which they would not be able to access otherwise.

Considering the benefits of clinical research, the International Trials Day aims to raise awareness of the importance of research to health care and highlights how partnerships between patients and healthcare practitioners are vital to high-quality, relevant research. This is why a number of healthcare providers, researchers, universities and public bodies, all over the country, are hosting series of activities, meetings, events and gatherings to involve public in the research they do.

ok-to-ask-header“OK to ask” is the National Institute for Health Research campaign to encourage more patients or carers to ask about research opportunities that could be available to them or their loved ones, if they have a medical condition they are receiving treatment for. Currently, recruitment into clinical trials is largely clinician-led. The aim of the “OK to ask” campaign is to change that. Click here to find out more about the National Institute for Health Research and their campaign.

Don’t hesitate and find out how the Clinical Trials Day will be celebrated in your area – and get involved!

In particular, we would like to highlight a host of activities taking place at Barts Health in London, between 20 and 29 May 2015, for patients and members of the public, as well as staff, to find out about their many different research studies and ways to get involved.

Please click here to see the full schedule of activities for the Clinical Trials Day at Barts Health.

“Clinical Trials: Why bother?” talk by Professor Atholl Johnston, may be of particular interest to our patients. We spoke to Prof Atholl Johnston at the last European Heamatology Association (EHA) Congress, where he delivered a very useful and insightful presentation on Drug quality in generics, substandard drugs, copies – the pharmacologist perspective.

 

Click here to see Prof Atholl Johnston 2014 EHA congress presentation slides – Drug Quality in Generics Substandard Drugs & Copies

Click here to read our summary from 2014 EHA Congress.

Click here to see the VIDEO clips from all 2014 EHA talks

NICE committees recruiting

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niceNICE needs new patient/carers/clinical staff members for their guideline committee.
This is a good opportunity to help shape future haematology services in the UK.

Please contact NICE directly to apply and for specific queries – but please feel free to call us if you have general questions about NICE and how MDS UK has participated in appraisals to date.

Please see information from NICE below:

Re:  NICE Improving Outcomes in Haematological Cancers, service guidance (update)

As you may already be aware, NICE is updating ‘The Improving Outcomes in Haematological Cancers – service guidance’ which was published in 2003 (see http://www.nice.org.uk/guidance/csgho/evidence/improving-outcomes-in-haematological-cancers-the-manual2).  The National Collaborating Centre for Cancer (NCC-C) has been asked to carry out this work.

It is very important that we recruit appropriately skilled people to become members of the guideline committee (GC) and we will be advertising through a variety of professional and other channels, inviting people to apply to join the group. We would then select the most appropriate people on the basis of their experience and background.

I would be very grateful if you could circulate this e-mail to anyone within your organisation who may be interested in applying. 

We are looking for representatives from the following professions:

  • Clinical Nurse Specialist x 2
  • Haematologists x 3
  • Paediatric Haematologist x 1
  • Medical Oncologist with an interest in lymphoma
  • Specialised Commissioner
  • Specialist Integrated Haematological Malignancy Diagnostic Service (SIHMDS) lead
  • Histopathologist
  • Radiologist with an interest in haematological malignancy
  • Consultant Clinical scientist with an interest in diagnosis of haematological malignancy
  • Haemato-Oncology Pharmacist
  • Patient / carer representatives x 2

The advert and application form for healthcare professional membership of the GDG (including the job description and person specification) can be viewed on the NICE website at: Member: Haematological cancers service guidance (update) committee group | Join a committee | Get Involved | NICE

The closing date for receipt of applications for healthcare professionals is 5.00pm on Thursday 30th April 2015.  Interviews will be held by telephone on Friday 8th May 2015.

We are also looking for 2 patient/carer members, the advert and application form (including the job description and person specification) can be viewed on the NICE website at: Lay member: Haematological (blood) cancer, service guidance update guideline committee | Join a committee | Get Involved | NICE

The closing date for receipt of applications for patient/carer members is 5.00pm on Thursday 30th April 2015

A copy of the draft scope for this guideline is available on the NICE website Haematological cancers – improving outcomes (update) | Guidance and guidelines | NICE

If you should need further information or clarification please do not hesitate to get in touch.

Lianne Gwillim

Project Manager/ Rheolwr Prosiect
National Collaborating Centre for Cancer / Canolfan Genedlaethol Cydweithredu dros Ganser
2nd Floor / 2il Llawr
Park House / Tŷ Parc
Greyfriars Road / Heol y Brodyr Llwydion
Cardiff / Caerdydd
Wales / Cymru
CF10 3AF

Tel/Ffôn – 029 2040 2917
Fax/Ffacs – 029 2040 2911
E-mail/E-bost – Lianne.Gwillim@wales.nhs.uk

MDS UK running vests are in!

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WP_20150410_003MDS UK running vests have arrived!

To celebrate our record number of brave marathon and other sporty events, we decided to have these running vests made – for MDS to stand out in the crowds.

This year we are so lucky to have 7 marathon runners – in Brighton and London:
Jodie Cooper, Caitlin Limmer Moni Lau in Brighton
Kevin Dwyer, Daniel Holah, Romit Basu and Georgina Cook in London

We then have many more energetic participants for the Isle of Wight Challenge:

Paul and Nessy Ungi, Andy Hadrick, Mark Bowen, Andrew Marples, Andrew Ross, Cate Skeat, Hazel Hutt, Susan Bunyan, Sarah Beardon, Verity Penzer, Shaun Hicks, Katia Pothecary

And for the Grand Union Challenge – Andy Houghton!

You can read details about each participant in our Fundraising events column – and sponsor them too.

https://mdspatientsupport.org.uk/events-1/fundraising-events-upcoming/

 

 

Many thanks to all these fantastic people giving up their time and energy to support our charity and the patients and families we assist.

We could not do it without you.

WP_20150410_008

 

Russell’s stem cell transplant experience – new video

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New video clip – Russell Cook’s stem cell transplant experience
05/03/15

We have uploaded a new video clip of our friend and new MDS UK trustee Russell Cook.

He tells us in detail about his experience of his three stem cell transplants – two from an unrelated donor – which failed, followed by stem cells from his 15 year old son Luke – which fortunately did work.

Russell has since gone on to run several marathons – and is doing extremely well.

Russell’s Stem Cell transplant from mds patient support on Vimeo.

 

A stem cell transplant is not an easy treatment option – nor is the decision to opt for a transplant.
If you are considering a stem cell transplant, please do have numerous conversations with your transplant team – until you have all the information you feel you need to make the decision.

Check the Anthony Nolan website, read the booklet “The 7 steps”.
All to be found on our Information Material webpage.

You may also talk to other patients – but do remember that every patient experience is fairly unique.
We have several other pages on our website that may help you as well.

Check our Useful links page – listing several stem cell transplant blogs – including practical tips on what to bring to hospital – how to cope for those 2-4 weeks in isolation, whilst the stem cells engraft.

If you are a healthy individual – aged 16 to 55 – please do consider registering to become a stem cell donor.
Your contribution and potential donation will save lives.
Contact Anthony Nolan or Delete Blood Cancer – visit our bone marrow donation page to learn more: Stem Cell Marrow Donation

You may also want to watch this great clip from our colleagues at the ACLT:

 

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