Thoughts on this World Arthritis Day

To mark World Arthritis Day, Jamie Hewitt, Government Affairs Manager at the National Rheumatoid Arthritis Society (NRAS) peers into Norman Lamb MP’s ministerial inbox and takes a look at the forthcoming Long-Term Conditions Outcomes Strategy.

Things move on quickly in politics. Just shy of one year ago today I posted a blog for Liberal Democrat Voice on the subject of a live webchat we had conducted with the Minister for Long-Term Conditions at the time, Paul Burstow MP.

During our public tête-a-tête the Minister was challenged squarely about the merits of introducing a musculoskeletal strategy and indicated that the Coalition Government would be taking a different approach altogether through developing a more generic long-term conditions (LTC) outcomes strategy instead. This was despite encouraging noises in an earlier parliamentary debate when the Minister agreed to ask the National Quality Board to look into the idea of a musculoskeletal strategy. Needless to say we were disappointed at this later news, but still held high hopes that the alternative LTC strategy would at least contain a specific section relating to this group of conditions to reflect some of the unique challenges they face and the fact that they represent the fourth largest area of spending in the NHS in England (accounting for £5.06 billion in 2011/12) and are a major cause of disability and time off work, accounting for around 7.6 million working days lost each year. Fast forward nearly 12-months and we are continuing to make the case for a musculoskeletal outcomes strategy even though there has been virtual radio silence from the Department of Health.

So, what about the LTC strategy? Well, things started with a bang – there was a two-day accelerated learning event held in London on 14-15 March 2012 – organised in conjunction with the NHS Institute for Innovation and Improvement.  The event brought together people with long-term conditions as well as stakeholders from healthcare, the voluntary sector and the Government to obtain views about what needed to be in the strategy.  We were titillated by highly polished computer presentations and encouraged to take part in a long series of group exercises all carefully designed to engender cooperation and discussion. You can see a short summary of the accelerating learning event here.

There was only one problem with this approach, however: the entire two-days consisted of shoe-horning people into discussing LTCs in relation to different stages of a person’s lifecycle. On paper I am sure this looked great, but in practice when you are dealing with a chronic autoimmune disease like rheumatoid arthritis, for example, the core issues about access to services and treatments are pretty much the same wherever you are in the lifecycle (unless you are transitioning into adulthood) and so I found myself sounding like a broken record as I moved from session to session parroting the same concerns over and over again. We have subsequently heard a rumour (unconfirmed) that the strong emphasis on the lifecycle in the strategy will be dropped. I for one do hope so, because in my mind it is a distraction to the main issues that needs to be addressed before the LTC strategy is published later this year.

Getting the balance right between specificity and generality has to be priority number one. Producing a strategy which covers such a large range of conditions under the umbrella term ‘long-term conditions’ is going to be tough. How do you reconcile the priorities of the neurological sector versus the musculoskeletal sector? Are the needs of people with fluctuating conditions really the same as those with motor neurone disease? Put it this way, 15 million people in England have one or more long-term conditions. I don’t think this is a single homogenous group. It therefore makes sense to try and address this complexity through more meaningful categories – a section for musculoskeletal conditions would be appreciated.

Ensuring that the strategy has teeth is my other really big concern. Our sector has already trodden down this path before with the Musculoskeletal Framework that was published in 2006. A perfectly respectable document with a good vision of what care should look like for people with these conditions – but with no financial resources to implement and no clinical lead to oversee the vision. Result? It has withered on the vine. Occasionally I see references to it made in footnotes of policy documents, appearing like the spectre of a ghost.

The good news is that the NHS Commissioning Board has at least appointed someone, Dr Martin McShane, to lead on long-term conditions in the new NHS (there is already a DH long-term conditions team), so the question will now be how much financial muscle this role will carry and what actionable points the LTC strategy will contain to enable him to knock heads together at the commissioner level.

It is an obvious point, but the LTC strategy should be a very important mechanism in the new NHS environment. The NHS Outcomes Framework and, as far as I am aware, the forthcoming Commissioning Outcomes Framework will use the lexicon of domains of quality (Domain 2 is ‘Enhancing quality of life for people with long-term conditions’) and some Clinical Commissioning Groups are also now appointing leads within their rank to take charge of long-term conditions agenda. With these developments we owe it to ourselves to produce a LTC strategy that can be translated into reality.

Why am I speaking up about this now? In a timely development we have just published a new report to coincide with World Arthritis Day called the Rheumatoid Arthritis (RA) Responsibility Deal.

The document contains a series of practical pledges for different audiences – including patients, healthcare professionals, NHS service managers and policymakers – that if implemented can help to make a real difference to the clinical outcomes of the 690,000 RA patients that live with the disease in the UK.

One issue that came up consistently in the nearly 700 consultation responses we received, which informed the report findings, was the desire to see policymakers do more to tackle the “postcode lottery” of access to services and medicines that exists and recognise the long-term costs and impact of failing to effectively manage RA on the health service, welfare system, employment, productivity and society as a whole. All of which are ripe areas for consideration at some level with the forthcoming LTC strategy.

In fact, there are two pledges that policymakers of all persuasions can sign-up to in the Responsibility Deal. These are: to increase the understanding of RA and raise its profile amongst other policymakers; and to help develop policy that will raise the standards of care and quality of life for people with RA.

We hope the new Minister will pledge his support.

* Jamie Hewitt is Government Affairs Manager of the National Rheumatoid Arthritis Society and writes on behalf of the Prescription Charges Coalition

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  • KERRY HARRISON 12th Oct '12 - 4:38pm

    Action for M.E. has challenged David Cameron to show real leadership and match President Obama’s bold and decisive move to force national health agencies to do more for people with M.E.

    The President has requested that both the National Institute of Health (NIH) and the Department of Health and Human Services (HHS) give a higher priority to M.E. and assigned his Deputy Chief of Staff to follow their efforts in achieving his wish.

    President Obama’s intervention follows a conversation at a grassroots meeting with a woman whose husband has M.E.

    Sir Peter Spencer, Chief Executive of Action for M.E., has written to the Prime Minister challenging him to make a similarly bold move.

    His letter says, “We have found that writing to your ministers – and indeed writing to ministers in previous administrations – draws nothing more than bland, often ill-informed, responses all too clearly written by civil servants.

    Sir Peter asks the Prime Minister, “It is time for action. Are you the man to take it?”

    Id like to know the answer to the above.

  • Richard Dean 13th Oct '12 - 1:24am

    Very interesting. The link under “here” doesn’t work for me. It should be

    The website says “the strategy will consider how people through help can prevent LTCs where possible and delay their onset”. The wording seems confused, but it sounds like a research project, certainly worth doing, and maybe it will lead to a strategy. This should notprevent reasearch into specific LTCs though. A

    t some point in the linked pdf they expect that “by 2020 a person with an LTC forgets they have LTC”. They seem to be at a very early stage in the development of their thinking, and a rather optimistic one!

  • These long term conditions do need to be able to get onto relevant agenda at every level. I submitted a representation to our draft “Joint Strategic Needs Assessment” on the document “Putting pain on the agenda” in July, as it recommended in that document. The summary of comments made mentions it – but it has not made it into the assessment. I wondered if others had managed to get anything on the issue into their JSNAa ? ours is all about stopping people doing things for a healthier lifestyle (don’t smoke, eat pasties, have sex you shouldn’t sort of thing) and nothing on the quality of life if you survive.

  • Long Term Conditions? They do not exist, ATOS cures people in 15 minutes.

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