I suspect few of you know this, but Wednesday was actually World Arthritis Day. For charities in the musculoskeletal sector this can be a pretty big deal, as we jostle to publish new research and try and ensnare policy makers in dialogue.
And so it proved to be when NRAS participated in a live webchat with the Health Minister, Paul Burstow MP, the man with responsibility for long-term conditions, like Rheumatoid Arthritis (RA).
Needless to say we were cock-a-hoop that the Minister agreed to participate. He could have quite easily cancelled on us due to all the palaver surrounding the passage of the Health Bill in the House of Lords.
However, he ploughed on and we ended up having a revealing conversation about some very pressing issues affecting the musculoskeletal sector.
Before I speak about the webchat, just a quick reminder of what RA is. RA is a chronic autoimmune disease affecting nearly 700,000 people in the UK, where the immune system attacks the body instead of defending it, causing inflammation that often results in serious damage to bones, joints and tendons. It can also affect the heart, eyes and lungs. It is nothing like osteoarthritis (a disease caused by the wear and tear of the joints as we get older), which people sadly all too often confuse with RA.
The webchat started out discussing a new report we produced with the Chartered Society of Physiotherapy (CSP), which uncovered some shocking information about adherence to clinical guidelines regarding the treatment of RA: nearly 1 in 3 had never been referred to a physio. This was despite the fact that the clinical guideline, which sets out best practice for the treatment of the disease, states that all people with RA should have access to a physiotherapist, working as part of a multidisciplinary team, with regular review.
The Minister naturally reflected our disappointment, saying GP referral rates needed to be ‘addressed’. In response to further questioning about the availability of self-referral (something CSP estimates is only available to 50% of people) the NRAS and CSP were pleased to hear the Minister say that the department has actively promoted the benefits of this approach and would ‘continue to do so’ through the Quality, Innovation, Prevention and Productivity (QIPP) programme and by introducing a new ‘referral to treatment data collection’ to highlight areas of excellence and under-performance to challenge clinicians. This is commendable, but it didn’t really address the issue of obtaining a referral in the first place.
Then discussions turned to the thorny issue of personal health budgets. This is a new innovation that the Government is currently piloting, which will give patients a sum of money each year based on their needs. They will then develop a plan jointly with their healthcare team to decide how best to use the budget to meet their health needs, including using the budget to buy personal equipment, pay carers, or try alternative therapies.
The Minister brought the issue up without being prompted and said he was keen to roll out the scheme. Although we support the idea in principle, our Chief Executive, Ailsa Bosworth, pressed him about the potential unintended consequences, stating that giving patients budgets could also undermine the core services providedthrough the multidisciplinary team (consultant, rheumatology nurse, physio, podiatrist, occupational therapist) that is supposed to be available to RA patients. The Minister responded by saying that, to the contrary, he believed personal health budgets could be ‘a powerful driver of integration’.
This raised a few eyebrows from us, as we have not seen any evidence so far about the impact on musculoskeletal patients. In discussions with the department we already knew that a derisory number of people with RA have so far been involved in the personal health budget pilots. Hence a new survey by Arthritis Research UK is currently surveying people with musculoskeletal conditions to find out if they want a personal budget and, if so, how patients would do things differently if you did have one. I’m sure the results will be very interesting.
Then we moved on to the elephant in the room (or 450 pound gorilla to be more precise): a strategy for musculoskeletal conditions. This is something the sector has been clamouring for, for a number of years, but only really cranked up this year with a parliamentary debate and subsequent commitment from the Minister to get the National Quality Board to look into the idea. Needless to say the sector was delighted by this response at the time. Musculoskeletal conditions are currently the fourth largest programme spend for the department, but unlike other comparable programme areas like mental health there is no strategy to improve outcomes. However, although the issue was supposed to be discussed at a recent meeting of the National Quality Board, the sector was subsequently told (totally unrelated to the webchat) that members had ran out of time at the meeting. Hmm…
Needless to say we were hoping for some more clarification about this at the webchat, but in the end the Minister seemed to signal a change in direction altogether. Instead of talking about a musculoskeletal strategy, he talked about plans to introduce a more generic long-term conditions strategy. This is of course welcome, but, obviously, not all long-term conditions are the same and problems with musculoskeletal conditions are particularly acute.
When the webchat finished we cordially shook hands and left feeling happy that we had managed to get our points across and that we had been properly listened to (although we didn’t always get the answers we wanted). In the end, the Minister signed off by saying that he enjoyed the experience and that we should look to do more of these webchats in the future.
Touché, Minister, touché.
* Jamie Hewitt is Government Affairs Manager, The National Rheumatoid Arthritis Society (NRAS)
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3 Comments
Some people know that I’ve lived with RA for over the last four years, but World Arthritis Day on Thursday completely passed me by, as I was having a bad RA week and needed just to focus on taking part in the debate in the House of Lords on Higher Education.
I ought to declare an interest as a supporter of NRAS, who do a fantastic job in raising awareness of RA and other auto-immune diseases, including raising funds for much needed research.
I’m delighted that Paul Burstow took part in the webchat, and knowing him, I’m not surprised. I’ve raised with him and with Earl Howe in the Lords the issues relating to treatment and support for RA patients.
I don’t think the problem is one that can be laid solely at Minister’s feet. Three years ago, I read the NICE guidelines for RA – as you do! – and went to my GP to ask for a referral for physio support. She was more than willing to refer me, but hadn’t been aware of how specific the guidance was. And, can I say, I don’t expect our GPs to be expert on everything, so we need to make sure that more GPs know what RA patients are entitled to.
Since then I’ve had help from physios, OTs (to help keep my hands going) and orthotists. The result is that I can actually get to work on bad days, and I’m able to make adaptations to what I do to cope with my reduced mobility (with ankle and wrist supports getting me through my day). But I suspect I’m unusual as a patient, in that I knew where to look to find the NICE guidelines.
RA is a wicked disease. Four years ago, I could deliver leaflets for three or four hours without too much trouble. Now I can’t even push a letter through a letter box, nor can I stand for more than 15 minutes without being in serious pain- even though I already take high levels of pain relief -, and the fatigue (another delightful symptom) can be all consuming. Large numbers of RA patients are unable to work within 5 years of being diagnosed.
The support from the musculoskeletal team is essential, and it is also part of the longer term chronic illness strategy that Paul talked about. We also need to continue research into the disease modifying drugs that – for some patients – put them into remission, either short or long term.
So thanks, Jamie for your posting, much appreciated, but I think I’m more positive than you about Paul Burstow’s contribution via the webcam!
Hi Sally -thanks for your post. Of course you are right! There is a much broader issue at stake, as compliance with clinical guidelines on the treatment of RA is a problem in England, Scotland, Wales and Northern Ireland. So we recognise there is a limit to what the Minister can do.
However, introducing an outcomes strategy for musculoskeletal conditions in England would represent a huge step forward, as the previous Musculoskeletal Service Framework, published in 2006, has not led to the improvement in clinical outcomes that we all hoped for. There is a great opportunity here, which I hope the Minister will seize with both hands.
Well said Sally!
As a Trustee of Arthritis Research UK I was delighted to hear you speak at our joint fringe meeting at the Lib Dem Conference. This is the first time AR(UK) has had a presence at all three party conferences but it is just a start. The charity has been going through a major change over the last couple of years. As well as funding research we will be campaigning for greater equality with some of the other major illnesses. The quality of care is far too variable as the young women Katie very graphically described when she spoke at the fringe meeting.
There is a lot of work to do but personnal budgets provide an opportunity to give a better access to services.