December 2019 network news

How can you help young people during their medical appointments?

We have Young People and Families teams across the UK. Our goal is for young people living with rheumatic musculoskeletal diseases (RMD) to:

  • feel less isolated
  • have increased understanding of their condition and the support available to them
  • feel more confident and optimistic for the future.

We run a programme of events throughout the year, including residentials, workshops and family events, co-facilitated by volunteer peer supporters who were themselves diagnosed when they were young.

We also work closely with some of the specialist paediatric rheumatology multidisciplinary teams across the country, attending MDT meetings and adolescent clinics.

For young people living with RMD, health appointments are a regular part of their lives. But the Young People and Families team often hears from young people that:

  • they do not know why they are asked certain questions during consultations;
  • they aren’t confident in asking questions in clinic appointments;
  • often, they don’t answer truthfully.

We developed a workshop to explore this further with young people. We ran it twice, with 36 young people participating. At the workshop:

  • 13 were male and 23 female;
  • those participating were aged 12 to 19, with the average age of 14 ½;
  • the young people had a range of diagnoses; 75 % had JIA (27 yp) and the remainder had diagnoses including Juvenile dermatomyositis, scleroderma, lupus, Ehlers-Danlos syndrome and hypermobility syndrome.

A paediatric rheumatology consultant, physiotherapist and a clinical nurse specialist generously videoed themselves asking “standard” health questions and gave an explanation of their meaning for us to share with the young people.

In the workshop, consequences of inaccurate answers to health questions were explored through the videos, quizzes and small group work. We also asked young people what healthcare professionals could do to help them engage more confidently (and honestly) in appointments. This is what they told us:

  1. Smile – this was the top answer. A smile can make all the difference! Young people said they felt more relaxed if their healthcare professional was friendly, engaging and interested in them and didn’t spend too much time looking at the computer screen.
  2. Be honest – even if they got upset, young people still wanted to know the truth about their diagnosis and the side effects of medicines.
  3. Ask patient not parent – if the healthcare professional looked to the parent for confirmation, the young person felt they were not being believed.
  4. Reassure – young people wanted to know things would get better, as to them, concerned faces could sometimes appear scary.

In general, young people need to be active participants in their healthcare if they are to independently manage their own health in the future.

If healthcare professionals can follow these top tips from the workshop, young people believe this will certainly help them to achieve this.

Find out more information about supporting young people with arthritis.

Have you got what it takes to become a 2020 Champion?

Following the successful launch of the Musculoskeletal Champions programme in 2018, we’re recruiting our third cohort of inspirational leaders committed to championing change in musculoskeletal (MSK) health care.

Together with Ashridge Executive Education we have created a bespoke leadership development programme which will support you to become a Versus Arthritis MSK Champion. If your application to this programme is successful, you will be supported and coached to develop your personal leadership skills and drive forward a service improvement project on MSK care, either with a local or national focus.

Champions currently on the programme have described the experience as ‘life changing’:

“It has given me the confidence to face difficult situations that potentially stand in the way of improving care. The programme has given me a lifelong network of like-minded individuals who offer support and mentorship. Our projects will improve the care for patients but more importantly the personal changes we are experiencing will be life long and so will the improvements for people with MSK conditions.” (Kay Stevenson, MSK Champion).

Applications open: 30 March 2020.

Find out more information on the 2020 MSK Champions.

Could a new blood test improve the lives of people with rheumatoid arthritis?

Methotrexate is used for the treatment of several long-term inflammatory conditions and is the most commonly prescribed drug for the 400,000 people suffering from rheumatoid arthritis in the UK. However, this weekly treatment can have significant side effects, meaning that many people do not take their medication as prescribed. In fact, around 40% of people with rheumatoid arthritis do not take their methotrexate medication as directed, putting them at risk of their condition worsening.

Many people who do not respond to methotrexate will go on to start more expensive biological therapies. However, in some cases this lack of response can be simply explained by non-adherence. Currently, being able to identify non-adherent patients is a challenge for healthcare professionals, as self-reported measures are not a reliable way of identifying whether a patient is taking their medication.

Manchester based researchers at our Centre for Genetics and Genomics Versus Arthritis and Centre for Epidemiology Versus Arthritis have been looking to tackle this issue. Here, Dr James Bluett and his team have successfully developed a new blood test that is able to measure, with 95% sensitivity, whether a patient has taken their methotrexate medication in the preceding seven days. Crucially, this could help to improve adherence by helping doctors start honest and supportive conversations with patients around the difficulties they may be experiencing with their medication, and how to resolve them.

This blood test now requires testing in a clinical trial in order to see whether adherence to methotrexate treatment improves when a person receives feedback about their blood methotrexate levels. If successful, this approach could be incorporated into routine clinical practice and, not only reduce healthcare costs, but also improve the health of people with rheumatoid arthritis.

More information can be found in the published article here.

News from Health Intelligence and Policy and Public Affairs

“All Our Health”

Public Health England and members of the Health Intelligence Team at Versus Arthritis have created a guide for healthcare professionals to why it is important to promote good musculoskeletal (MSK) health in everyday practice.

The guide, part of the ‘All Our Health’ resource, will help those at the frontline use their trusted relationships with patients, families and communities to lower the risk of developing MSK conditions.

Find out more about the guide.

Pushing arthritis up the political agenda – how you can help

Following the election, our colleagues in Policy and Public Affairs are working hard to push arthritis up the political agenda. Our MPs have the power to influence decisions around important issues that affect people with arthritis, including joint replacement surgery waiting times and employment. We’re collecting messages for new MPs to tell them why arthritis matters and why they must take action.

Help us by sending your message today.

Our approach to research funding is evolving

The scale and burden of arthritis is growing, but in many ways remains invisible in society and people with musculoskeletal conditions are not universally receiving the care and treatment they deserve.

At Versus Arthritis, we don’t think this is ok. From our past successes, we know research can deliver effective outcomes for people with arthritis. However, musculoskeletal research is not currently being prioritised in the UK and is not being translated fast enough into support and new solutions.

There is a clear and urgent need for a new approach to musculoskeletal research if the millions of people living with arthritis today and in the future are to have a better quality of life.

We want to lead the change, working together with people with arthritis and the research community. Today we are pleased to share progress towards our approach to research funding.

We believe that, with your help, it will enable us to transform musculoskeletal research so it has a far greater impact on the millions of people living with arthritis.

Find out more about how our approach to research is evolving and how you can help.