News Archives - Page 7 of 36 - MDS UK Patient Support Group

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Important Update about our Online Patient Meetings

Posted on 06/05/2022 at 9:38 pm.

However, we are aware that if you have a hearing impairment, you may have missed registering for our Zoom meetings because you were worried you would not be able to hear what people were saying.

Good news! With the latest Zoom updates, MDS UK is now able to offer live subtitles at all our Zoom online meetings. It isn't perfect, as all of you used to using subtitles will know, because it depends on the clarity of each speaker! But it will help you to follow the conversations and join in the discussion.

Would you like to see an MDS Specialist?

Posted on 14/04/2022 at 5:35 am.

Written by Manuela Rotstein

The UK MDS Forum is a UK specialist group of haematologist, which works extensively with other MDS experts worldwide. Its haematologists are MDS experts and have extensive experience treating MDS patients. They can work with your local haematologist to offer you the best possible care and advice.

Under NHS rules, you are free to seek a referral to the hospital of your choice.

To get a referral, please just ask your GP or your haematologist to refer you. You will receive an appointment in the post as soon as possible.

If you'd like more information please contact us info@mdspatientsupport.org.uk or call 020 7733 7558

How can you access this service?

MDS is a rarer disease, and often requires an MDS expert to evaluate the exact sub-type of MDS, or explore and discuss additional treatment options, including clinical trials.

Your haematologist, or GP, needs to refer via the traditional referral system.

An appointment will be arranged after receipt of a formal referral from either the GP or local haematologist, which should contain as much detail as possible, specifically results of bone marrow tests and details of treatment, if relevant.

Volunteer With Us

Posted on 03/04/2022 at 9:55 am.

Written by Manuela Rotstein

We are always looking for enthusiastic new volunteers to help with various aspects of our expanding patient services

Have you or your loved one benefited from helpful information, support, or other services from MDS UK?
Would you like to be part of a team of enthusiastic volunteer MDS Ambassadors to help maintain our vital services to all those affected by MDS and CMML?
Do you have a little spare time and looking for something fulfilling?
Do you have skills and experience from previous paid or voluntary work?
Could you help make a difference to MDS UK?

If you have answered “Yes” to these questions and are interested in knowing more, please have a look at our MDS UK Ambassador leaflet, for more details on the roles, or visit our Ambassadors Page.

Brighton Marathon 2023 – Register to Run for MDS UK!

Posted on 01/04/2022 at 11:03 am.

Written by Claudia Richards

Take part in an NHS consultation on new standards to diagnose cancers earlier

Posted on 15/03/2022 at 4:38 pm.

Written by Manuela Rotstein

Developed with clinical leaders, the proposals – supported by NHS staff as well as patient groups and cancer charities – aim to simplify and update cancer standards, based on the recommendations of the Independent Cancer Taskforce.

Patients, clinicians and the public are asked to share their views on the proposed standards, with a report setting out the changes published today.

Cancer currently has a complex set of nine separate performance standards, with different targets covering different routes into the system, for example, screening or a GP referral.

The new plan proposes ensuring patients have the same opportunity for faster diagnosis and treatment, including:

The 28-day faster diagnosis standard, which would see patients who have been urgently referred, have breast symptoms, or have been picked up through screening, have cancer ruled out or receive a diagnosis within 28 days.
A 62-day referral to treatment standard, meaning patients who receive a cancer diagnosis will start treatment within nine weeks from the date of referral.
A 31-day decision to treat to treatment standard, so that cancer patients receive their first treatment within a month of a decision to treat following diagnosis.

These new standards aim to make diagnosis and treatment timelines easier to understand for people with suspected cancer and their families, while also helping to diagnose cancers earlier and save more lives.

Before the faster diagnosis standard was introduced, access standards for cancer have remained unchanged since 2009. The current two week wait target sets no expectation of when patients should receive test results or actually get a confirmed diagnosis.

Cancer care has been prioritised throughout the pandemic with latest data showing the number of people getting checked for cancer increased by over half a million (512,110) in one year between December 2020 and December 2021.

In December alone, there were over 215,000 urgent referrals for cancer and more than nine out of 10 people started treatment within one month.

Dame Cally Palmer, NHS National Director for Cancer said: “Access standards have been key to improving timeliness of treatment for people with cancer since they were first introduced in 2000.

“As we see advances in diagnosis and treatments for cancer, it is only right that these standards are modernised – so that we can ensure patients are diagnosed more quickly and are given the treatment they need as soon as possible, helping us save even more lives.

“These proposed changes are an important part of improving cancer care and so from today, the NHS will be inviting views from patients, staff and the public”.

Professor Peter Johnson, National Clinical Director for Cancer for NHS England, said: “We know that people having tests for possible cancer want to know the results quickly, and updating the standards to reflect this will help us to make sure we are able to deliver the best possible care.

“We are encouraging colleagues in NHS cancer services to share their views on the consultation to ensure we have standards that are better for people with cancer”.

Health and Social Care Secretary, Sajid Javid said: “As part of our 10-Year Cancer Plan, we want to offer patients the best possible care and treatment.

“These proposals will help us speed up diagnosis times and treatment, and save more lives.

“The NHS wants to hear from as many people as possible – and is seeking advice from patients, staff and the public. Please, make your voices heard”.

Under the new proposals, the NHS would focus on the time from referral to people finding out their results within a maximum of 28 days. This faster diagnosis standard has a clearer focus on measuring and incentivising early diagnosis, rather than just time to first be seen.

Areas where the new standards have been tested have shown that performance against the 62-day referral to treatment standard was significantly higher (74.9%) than the control group (71.7%) when using the new measures.

Proposals are in addition to the target announced in the elective recovery plan, published last month, which outlined the NHS aim to return the number of people waiting more than 62 days from an urgent referral back to pre-pandemic levels by March 2023.

Catherine Harper-Wynne, Chair of the Breast Cancer Faster Diagnosis Group, said: “The proposed update in standards provides a better reflection of our current clinical approach and allows for greater flexibility to offer patients the most efficient route to diagnosis, allowing us to start treatment as quickly as possible. For breast cancer patients, there is evidence, from the pilot already completed, that a higher proportion of patients had cancer ruled out within 28 days”.

Jane Lyons, CEO of charity Cancer52, said: “People with rare and less common cancers often have vague symptoms and it can take longer for their cancer to be diagnosed. So a commitment to a diagnosis in 28 days for all cancers, including those that are more challenging to diagnose, is a good step forward. Earlier diagnosis can mean more people start treatment sooner and more lives will be saved, and we support work to help the NHS meet its ambitions to diagnose more cancers faster and earlier”.

Patients have told the NHS that the focus on achieving a rapid diagnosis or ruling out of cancer is the right one, and is more meaningful to patients than the timing of a first appointment.

All-Party Parliamentary Groups evaluate the impact of COVID-19 on blood cancer services

Posted on 10/03/2022 at 3:14 pm.

Written by Manuela Rotstein

In March 2020, the country was hit by the worst pandemic in a hundred years, changing all our lives dramatically. In many ways, people living with blood cancer have been uniquely impacted by the COVID-19 pandemic.
Whilst in the last decade there has been hardwon progress on blood cancer survival, the pandemic has placed this in peril, with the very real prospect that survival rates in the UK could decline for the first time.

As Chairs of the All-Party Parliamentary Groups on Blood Cancer and Stem Cell Transplantation and Advanced Cellular Therapies, we wanted to uncover the extent of the deep and ongoing impact of the pandemic on the blood cancer community. From increasing waiting times to changes to treatment pathways, it is clear this has been a major shock to the system that has ramifications for the physical and emotional wellbeing of people living with blood cancer, their families, and the NHS staff caring for them.

It remains to be seen what the long-term outcomes will be. As the evidence submitted to this inquiry attests, much depends on the NHS being equipped with the resources it needs to address the growing cancer backlog which threatens to persist for years to come.

We hope the recommendations of this report will serve to support the efforts underway to recover blood cancer services and meet rising demand, by highlighting the experiences and priorities of patients, families, carers, and healthcare professionals.

We are grateful to all those who contributed evidence, during what continues to be a challenging period for the whole of the blood cancer community. We are particularly indebted to the people living with blood cancer who shared their experiences with us at such a testing time.

It is of vital importance that the needs of people with blood cancer are not overlooked as the NHS sets the pathway to recovery from the pandemic. Our hope is that the recommendations set out in this report shape the future of blood cancer services and ensure that the needs of people living with blood cancer in this context remain firmly on the NHS and political agenda.

Henry Smith MP and Mark Tami MP
Chairs of the APPG on Blood Cancer and the APPG on Stem Cell Transplantation and Advanced Cellular Therapies

3rd & 4th doses COVID-19 vaccination for MDS patients

Posted on 10/03/2022 at 2:22 pm.

Written by Manuela Rotstein

A 3rd dose and booster dose (4th dose) of the coronavirus (COVID-19) vaccine is being offered to people aged 12 and over who had a severely weakened immune system when they had their first 2 doses.

This includes patients who had or have a blood cancer such as MDS or CMML and patients who had a bone marrow transplant.

If you're booking a 3rd dose all of these must apply:

you’ve received a letter from your GP or hospital specialist inviting you to book a 3rd dose
you’re aged 16 years old or over
it’s been 26 days since your previous dose - you'll be shown appointments from 8 weeks (56 days) after your 2nd dose
You’ll need to bring the letter with you to your appointment.

If you do not have a letter from your GP or hospital specialist inviting you for a 3rd dose, you must bring either:

a hospital letter that describes the condition or treatment that caused you to have a severely weakened immune system at the time of your 1st or 2nd dose
a prescription or a medicine box with your name and the date showing when the medicine was prescribed - this must show that you had a severely weakened immune system at the time of your 1st or 2nd dose
A clinician at the site will check to make sure that you’re eligible for a 3rd dose.

If you think you’re eligible for a 3rd dose but you do not have a suitable letter, prescription or medicine box, please contact your GP or hospital specialist.

If you're booking a booster (4th dose) all of these must apply:

you have a letter from a GP or hospital specialist inviting you to book a 3rd dose or booster (4th dose) for people with a severely weakened immune system
you're aged 16 years old or over
it's been 2 months (61 days) since your previous dose - you'll be shown appointments from 3 months (91 days) after your previous dose
You'll need to bring the letter with you to your appointment.

A clinician at the site will check to make sure that you're eligible for a booster (4th dose).

If you think you're eligible for a booster (4th dose) but you do not have a suitable letter, please contact your GP or hospital specialist.

Learn more:

https://www.nhs.uk/conditions/coronavirus-covid-19/coronavirus-vaccination/coronavirus-vaccine-people-with-severely-weakened-immune-system/

"If you are eligible and you do not have a referral letter from your GP or hospital consultant, you can still opt for a walk-in vaccination appointment, but you will need to present relevant medical documentation confirming your condition and have an assessment on site by a qualified healthcare professional.
It is important to be aware that not every walk-in site is able to offer vaccination for people who are severely immunosuppressed, so please use our online walk-in site finder to make sure you choose the right site for you.
Examples of medical evidence that can be used to confirm your eligibility includes, but is not limited to:
• A hospital letter describing your condition at the time of your 1st and/or 2nd dose.
• Evidence of prescribed medication at the time of your 1st/2nd dose – either in a hospital letter that describes the medication being prescribed, a prescription copy or a medication box with your name and the date on it."

Letter to Members with Updated Advice on Covid-19 for MDS Patients

Posted on 10/03/2022 at 2:20 pm.

Written by Manuela Rotstein

Dear MDS patients,

At the end of February we sent out a postal letter to all patients without internet access.

The postal letter included the latest Covid instructions.

We include these instructions here so that you can read them carefully and follow them to increase your protection.

We are aware that not all MDS patients have received this information from the NHS. Please show it to your GP if necessary.

We keep working to resolve issues with the NHS to ensure all patients receive all necessary official letters.

Best wishes,

Caroline Mc Govern – Office Manager

Chaudian Morgan – Membership Officer

Sophie Wintrich – CEO

Some MDS patients have had problems getting access to their fourth dose of the covid vaccine and may not have been made aware of the four new COVID treatments available to MDS patients, both of which they are entitled to. This is the result of the NHS Digital having omitted to include several types of blood cancers, and due to the overwhelming pressure of work at many GP surgeries. Some of you will have received all the relevant information, but for those who have not, here are some tips put together by fellow MDS patients who had missed out on information from NHS centrally, or their GP.

All MDS patients are urged to ensure that they receive their 4th vaccine, and that they are aware of the priority COVID treatments and how to obtain them if they develop COVID symptoms.

4th Dose of COVID Vaccine

MDS patients should receive a 1st, 2nd, and 3rd 'Primary' dose, and then a 4th dose (the 'Booster') at least 91 days after the 3rd Primary dose. Experience of many of our members has found that, at some GP surgeries, MDS patients have had their 3rd dose recorded as a 'booster' in error - which has then led to them not being invited back for their 4th dose (their real 'booster').

If that has happened to you:

Contact your GP surgery and ask for your 4th dose of the covid vaccine.
If necessary, remind your GP surgery that an MDS diagnosis puts you in the highly vulnerable group (with MDS being a rare condition, the Admin Staff at GP surgeries can often not be aware of this).
You can also get your 4th dose at a Walk-In Centre, but you may need a letter from your consultant.
Contact your MDS clinical care team (via your specialist hospital nurse or Consultant’s office) if you haven’t already had a letter which states that you needed a 3^rd Primary dose / 4^th Booster dose.

Access to Urgent Treatments Should You Catch Covid

All MDS patients are also entitled to be assessed to receive one of four different covid treatments, two of which are given intravenously on a day-visit to a local hospital, and two which are dispensed in tablet form.
These medicines are called Sotrovimab, Paxlovid, Remdesivir and Molnupiravir.

These drug treatments must be started within 5 days of symptoms starting – so speedy access is crucial.

Priority PCR Test Kits are available to MDS patients to have on 'stand-by' at home to help speed up the process. If you haven't already been sent one then you should telephone the NHS 119, see below.

Do this straightaway, and don’t wait until you develop symptoms, the idea is to have one on hand at home in case you need one. These priority PCR test kits are labelled differently to ordinary PCR test kits, so that when they are received at the laboratory and they are confirmed as positive for COVID, you are 'flagged' for priority access to the treatments through what is known as a CMDU (Covid Medicines Delivery Unit).

Dial 119 (be prepared to have to make up to 7 or 8 ‘option’ choices). You need to speak with someone about PCR tests, to obtain a ‘Priority PCR Test Kit.’ You may need to be gently persistent and ask to be put through to the Elective Care Team. They will be able to take your details and send you the Priority Kit.
If you develop covid symptoms use this Priority PCR Kit and send it off URGENTLY.
It is not absolutely necessary to use the Priority PCR Kit if you haven't received one. It is also now possible to use an LFT (Lateral Flow Test) but if you do, it is important that you register the result by phoning 119 (or if you are able, online at https://www.gov.uk/report-covid19-result ).

Because of the urgency required in receiving these treatments if you catch covid, it is also recommended that if you test positive on a Lateral Flow Test at home, or through a PCR test that you have sent away, you should also contact your hospital MDS care team as soon as possible to advise them, as they may also be able to arrange for you to receive one of the urgent treatments.

This 'belt & braces' approach is recommended, to reduce the risk of any delay in receiving one of the treatments. Remember that the COVID treatments must be started within 5 days of symptoms appearing.

Lateral Flow and PCR tests to remain free of charge for vulnerable patients after 1st April 2022

Posted on 03/03/2022 at 6:35 pm.

Written by Manuela Rotstein

Sajid Javid announced today (03/03/22) that Lateral Flow Tests and PCR tests will remain free of charge for vulnerable patients after 1st April 2022.
All blood cancer charities are now requesting clarifications about which patient groups exactly will be entitled to the free tests.
We are also calling for free tests for friends, families and employers of vulnerable individuals.

If you are using Twitter, or your friends and families are, please support our twitter posts.

This is very important as we need maximum visibility for MDS.

Do also feel free to contact your MP, stating that:

you require access to free LFT and PCR tests, for family/friends
NHS Digital and NHS England MUST include MDS in the extremely vulnerable cohorts, to ensure all MDS patients receive all necessary information for their care, directly from the NHS, and not from a GP or local hospital.

Ask your GP to send you this letter:
https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2021/12/C1480-patient-notification-letter-important-information-about-new-treatments-for-coronavirus.pdf
Call 119 for advice, selecting the option for Test & Trace:
> if you have not received a PCR test by 10 January 2022 Classification
> or you develop symptoms before your PCR test arrives or
> or you lose your PCR test or it has any damage or missing parts

Learn more: Treatments for COVID-19 and their eligibility

28/02 is Rare Disease Day: Take part!

Posted on 23/02/2022 at 12:09 pm.

Written by Manuela Rotstein

MDS is 'the forgotten blood cancer'. It is often not labelled as a form of cancer, and therefore not captured in the guidelines developed by the health authorities. This has become critical during the pandemics, where MDS - and CMML - have been frequently excluded from the lists of diseases deserving special treatment.

Now, with Covid restrictions lifting, we would like to highlight on Rare Disease Day the dangers this poses to MDS and other blood cancer conditions.

Approximately 7,000 people live with MDS in the UK, and they all struggle to live with COVID: even with four vaccine doses their protection to the virus may still be weak.

Read a recent study published by The Lancet:
Omicron neutralising antibodies after third COVID-19 vaccine dose in patients with cancer

For the time being at least, we are planning to continue meeting on Zoom, rather than face-to-face.

Latest News

How can you access this service?

Would you like to share your questions about MDS? We can help you - Contact us Send an email to info@mdspatientsupport.org.uk or call 020 7733 7558

Latest News

Enthusiastic volunteers needed!

Find out how to become an MDS UK Ambassador

Email Us

Give us a call!

Latest News

We are excited to announce that we have free places for the Brighton Marathon Weekend 2023!

When: 02.04.2023

Where: through Brighton city centre, along its glorious seafront

Entry fee: free!

Minimum fundraising target: full marathon £350 - 10k race £150

Interested? 3 steps to Register

Not a runner yet?

Latest News

The NHS launches a consultation on proposed new standards that will help diagnose more cancers earlier and save more lives

Latest News

"People living with blood cancer have been uniquely impacted by the COVID-19 pandemic"

Latest News

Coronavirus (COVID-19) vaccine for people with a severely weakened immune system - Updated March 9th, 2022

If you're booking a 3rd dose all of these must apply:

If you do not have a letter from your GP or hospital specialist inviting you for a 3rd dose, you must bring either:

If you're booking a booster (4th dose) all of these must apply:

If you think you're eligible for a booster (4th dose) but you do not have a suitable letter, please contact your GP or hospital specialist.

Please know we are continuing to communicate with NHSE to improve the situation on both vaccination and treatment

Which medical evidence can be used to confirm your eligibility for the 3rd and 4th doses? (Excerpt from the NHS document)

Latest News

Summary of latest advice on COVID protection – Updated on February, 2022

Covid Vaccines and Covid Treatments – 21st February 2022 status

4th Dose of COVID Vaccine

Access to Urgent Treatments Should You Catch Covid

Latest News

If you are using Twitter, or your friends and families are, please support our twitter posts.

For those on Twitter, our colleagues from Blood Cancer UK sourced the announcement by Sajid Javid:

Please know we are continuing to communicate with NHSE to improve the situation on both vaccination and treatment

Having issues accessing PCR kits for potential COVID-19 antibody treatments?

Latest News

What is Rare Disease Day?

Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.

MDS: a Rare Blood Cancer

Rare diseases get forgotten

Would you like to share your questions about MDS?
We can help you - Contact us
Send an email to info@mdspatientsupport.org.uk
or call 020 7733 7558