Health: Polymyalgia Rheumatica and Giant Cell Arteritis

Baroness Brinton Excerpts

Wednesday 30th March 2011 Grand Committee

[Baroness Brinton]

My Lords, I thank the noble Lord, Lord Wills, for calling this debate on a rare pair of diseases that have serious impacts on patients’ lives. I also have a sense of déjà vu, having spoken in the previous debate about holistic services for those with life-limiting illnesses, based on my experience of physiotherapy services for rheumatoid arthritis. RA is much more common than polymyalgia rheumatica and giant cell arteritis, and I suspect that diagnosis of it is relatively easy. Today, I shall focus on PMR.

I say “relatively” because for most of the time the diagnosis of this family of auto-immune diseases is often a bit hit and miss, with much of it based on a subjective view of the GP on the level of stiffness of joints and pain that a patient is experiencing. That is particularly true for those who have seronegative rheumatology disease, which can be just as disabling for those with seropositive results. I know of sufferers who say that it took them a long time to get their GP to take their pain and stiffness seriously enough even to get a referral to a consultant. After all, is stiffness not just a bit inconvenient? For those without this type of arthritis it is impossible to convey the dread of waking up in the morning, knowing that that first move to get out of bed is like moving after having a night’s sleep following a 20-mile hike the previous day. Yet that happens every morning and every joint screams at you as you start to move.

As your creaky joints start to loosen up, you are working out how on earth to get down those stairs. Your knees and ankles will not co-operate for at least the next hour, and your shoulders are so stiff that you cannot lift them to hold the banister. Yet you need to get downstairs because, while you cannot take your medication until you have eaten, you are desperate for the anti-inflammatory steroids and painkiller drugs. For patients trying to get a diagnosis, that must be absolutely terrifying. They may not have learnt the language of pain description, let alone have got access to pain clinics and effective pain control. The noble Lord, Lord Black of Brentwood, made the essential point about over-reliance on steroids. The Prednisolone bounce may give relief—I speak from personal experience—but its long-term use is worryingly dangerous. For PMR, the use of disease-modifying drugs such as Methotrexate should now be investigated as routine, as they are for RA, thus reducing the need for long reliance on steroids.

For PMR sufferers, there is also the further problem of disabling headaches, which are famously difficult to diagnose as they can be symptoms of a large range of problems, some serious and others not. Thirty years ago, many GPs would have put this down to stress. Perhaps some still do today.

As I mentioned in the previous debate, the NICE guidelines are very impressive, but there is an issue about GPs being aware of the detail and therefore ensuring that patients get early access to specialist physiotherapy, occupational therapy and so forth. I hope that the Minister will forgive me for briefly repeating the point that I made in the earlier debate. This early specialist intervention is absolutely vital. In my own case, I see a physiotherapist, a hand specialist and an orthotist, all of whom are there to ensure that I keep as much mobility and flexibility as possible.

Patients who do not get access to this specialist physio and OT support tend to lose mobility earlier and are more likely to give up working sooner than their colleagues who are getting that help. A substantial percentage of rheumatology patients are no longer able to work within five years of diagnosis. This is vital for the independence of patients but, frankly, it is also vital to the country because of the cost of supporting those patients. The same is true for PMR but, without the NICE guidelines, it is almost impossible.

Rare diseases need champions and I ask the Minister to ensure that PMR patients get access to the NICE guidelines or, while that is being sought, that they are deemed to be covered by the RA guidelines, many of which seem to cover the treatment needed for PMR. Reading through the drug regime, the physical needs and so forth, there is much overlap. I ask the Committee to forgive this non-clinician patient view of the world. I am sure that it is too simplistic but there are things that can be learnt from it. Surely access to the appropriate holistic services is as essential for PMR patients as for RA patients.

I want to end on a positive note. I asked the Minister privately some time ago about the status of these NICE guidelines under the proposed new healthcare changes emerging from the White Paper and the Bill. I was much encouraged with his response that the guidelines would take a stronger role for clinicians in their treatment and support for patients. What is important is that NICE has the capability to produce guidelines for the rarer diseases in the rheumatology sector that rely on early diagnosis and treatment to protect the health of the patient and to prevent deterioration through active physiotherapy.