Transforming lives together

COVID-19 – at the centre of the myeloma community

From the beginning of the pandemic, we’re the hub for patients – discovering how myeloma patients are affected and sharing advice and support.

Calls to our Infoline increased by 249% at the start of the pandemic, and our COVID-19 information hub is viewed over 66,000 times. More than 1,700 patients share their experiences with us, guiding our work with policymakers to ensure that myeloma isn’t ignored.

The pandemic is a challenging time for myeloma patients and their families – but we do everything possible to reduce its impact and help everyone affected by myeloma keep living life to the fullest.

Easy-to-read guides to empower more patients

We launch a range of easy-to-read guides about myeloma, designed for people with learning disabilities and anyone who struggles to read written English.

The feedback is positive from the start. “I like the design, which is great for reading together with a carer, and which focuses on each message individually, so people can take it one step at a time.”

Launching a new Infopack for carers

Hot on the heels of our carer research, we produce new support and information for carers – based on what carers tell us they need most.

The Infopack explores what a carer is, how caring can affect your life and how you can take care of yourself as a carer. The feedback is fantastic. We’re over the moon to receive comments like this:

“I think what Myeloma UK does really well is it comes across as inclusive. It’s an acknowledgment that… just because we don’t have the illness doesn’t mean our lives are not just as much turned upside down.”

Rewarding hospitals that provide exceptional care

Our Clinical Service Excellence Programme (CSEP) launches. It recognises hospitals leading the way in myeloma care and helps to raise standards of care nationwide.

Myeloma patients are at the heart of CSEP, completing surveys that cover every stage of their experiences.

In the years after its launch, CSEP awards have become highly sought after. 44 hospitals have now gained CSEP accreditation.

Our first publication written entirely by patients and carers

We launch ‘The small things that make all the difference’. It’s packed with tips, stories and reflections by and for people affected by myeloma.

We’re proud to be at the heart of the myeloma community and to put patients first in everything we do. The booklet has now been downloaded or sent to people hundreds of times – and we know it creates hope.

As one person told us: “It’s a fantastic little read. It makes you know you ain’t alone.”

The children’s book that brings myeloma to life

We work in all kinds of ways to raise awareness of myeloma, including publishing a book – Kelsey and the Yellow Kite – to help children understand.

Real-life hero Kelsey inspires the story. She was seven when her dad died of myeloma. Kelsey’s family went to incredible lengths to raise over £13,000 for our work.

Kelsey and the Yellow Kite contains beautiful illustrations and explanations of things like myeloma and stem cell transplants. The British Medical Association highly commended it.

Guidelines for AL amyloidosis? It started here.

We fund the first guidelines on diagnosing, managing, and treating AL amyloidosis. It’s a landmark moment – setting the expected standard for patients and professionals.

Funding these guidelines helps improve the quality of care available across the UK. We’ve kept pushing for further improvements ever since.

Our landmark guide to living well with myeloma

Practical challenges. Emotional challenges. Medical information. Our groundbreaking guide to living well covered them all – answering myeloma patients’ and carers’ biggest concerns.

It’s based on the questions people ask us most often. And, as survival rates for myeloma increase, the guide keeps getting bigger.

Today, we have two Infopacks – one for living well with myeloma and one for carers. We’ll never stop working to make life better for everyone affected by myeloma.

Paving the way for myeloma guidelines

In the early 2000s, a lack of evidence-based guidelines meant myeloma patients’ experiences of diagnosis and treatment varied hugely. So we get to work.

We link up with the myeloma experts at the UK Myeloma Forum and the British Society of Haematology. Together we publish a series of recommendations on how myeloma should be diagnosed and treated.

This makes sure clinicians nationwide follow guidance from the UK’s top myeloma specialists and paves the way for the guidelines that are still used today.

Supporting nurses, improving care

Nurses play a vital role in myeloma patients’ lives. But when we launch there were very few specialist myeloma nurses – and no myeloma education programmes for nurses.

So in response, we set up MAGIC – an information-sharing network for nurses. It grows fast, so we start running education days for nurses. Then we develop nurse best practice guides.

Today, our accredited Myeloma Nurse Learning Programme is the gold standard. Over 200 nurses (and counting) have joined us to make sure they provide patients with the best possible care.

A new level of myeloma information and support

When we launched, getting the latest, evidence-based information about myeloma in the UK was anything but easy. So we set about changing that.

We launch the Myeloma Infoline, helping people get practical advice and emotional support. We begin providing information about myeloma and its treatments. And we hold our first Myeloma Infoday in Edinburgh.

Since then, we’ve sent almost 2million publications, answered over 60,000 calls, and hosted more than 200 Infodays. Patients and carers know they can always come to us when they need information about myeloma.