Health: Neuromuscular Services

Baroness Brinton Excerpts

Wednesday 30th March 2011 Grand Committee

[Baroness Brinton]

My Lords, I thank the noble Baroness, Lady Thomas, for instigating this vital debate and confess to an embarrassingly limited knowledge of neuromuscular diseases compared with those who have spoken already. However, because of my experience with rheumatoid arthritis, I hope that your Lordships will allow this patient with creaky joints a brief contribution on the attitude and practice of PCTs and GPs in providing appropriate specialist physiotherapy.

The NICE guidelines, where available, are a very good illustration of how one can help a patient with a life-limiting illness with an holistic service. The guidance for those with MS is as comprehensive as the guidance for those with rheumatoid arthritis, with which I am obviously more familiar, but there needs to be more for other neuromuscular diseases as a matter of urgency. As the noble Baroness, Lady Jolly, commented earlier, this is becoming the theme of this debate.

Page 19 of the MS guidance states that,

“a specialist neurological rehabilitation team ... should include specialist doctors, nurses, physiotherapists, occupational therapists, speech and language therapists, clinical psychologists and social workers”.

The theory of this is fine, but having talked to friends at our Tai Chi for arthritis class in Watford, which includes those with MS, I know that the reality can be patchy. With budget pressures on PCTs at the moment, it becomes very easy to dilute that support for patients.

For example, I have heard that at the end of last year my own PCT, West Hertfordshire, was considering creating its own “first line” of physiotherapy for patients not already referred to the hospital. At a practical level, this would mean that physios at the hospital would not be needed and would be sitting around with empty appointments lists. Much more worryingly, patients would be seeing a general physiotherapist who did not have the specialist training needed for neuromuscular diseases or diseases such as RA, when they needed to be seen by specialists right from the start.

This early specialist intervention is vital. In my own case, I see a physiotherapist, a hand specialist in OT and an orthortist, all of whom are there to ensure that I keep as much mobility and flexibility as possible and avoid serious joint deformity. Members may see me doing peculiar hand exercises at odd times. It is not semaphore; I need to keep my fingers and wrists moving before they completely stiffen up. 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. For those with neuromuscular conditions, maintaining the tone of muscles is also vital. It is vital for their independence. Frankly, it is vital also for the cost to the country of supporting them.

I gather that there was an outcry at the proposal from my PCT for a “first line” general physiotherapist and it was quietly dropped. However, I remain concerned that, in the current tight financial world, money becomes the order of the day, making it easy to curtail these services. I was also interested in the comments of the noble Lord, Lord Luce, about limited access to pain clinics. They are absolutely vital. In my own PCT, referrals take many months—often more than a year—which is hopeless if you are in severe pain and need support.

I also have concerns about the ability of GPs, with the pressures on their time, to plug patients into the specialist services. The NICE guidance for MS runs to 218 pages, with the one for patients and the public a mere 64 pages. Hard-pressed GPs, who may see very few patients with these diseases, cannot keep all the different details of NICE guidance in their heads, and new patients often do not know to what they are entitled. It is a Donald Rumsfeld situation: you do not know what you do not know. However, being fairly brazen, I asked my GP for help with my support early on, and she and I read through the guidance together and mapped out a plan. She said that, until I asked her, she had not been aware of the entitlement to the full range of physiotherapy support. I do not blame her for that at all. There is no way that a GP can know all there is to know about every bit of NICE guidance. I add in parentheses that the NICE guidance is seriously impressive and, if we use it as a standard, that will be fantastic. I return to the point that I made earlier—the receipt of this support by patients is very patchy.

I also know from talking to other RA and MS patients in my area that they had no idea at all that they were entitled to specialist physiotherapy services, and, more worryingly, nor did their GPs. I suspect that the same is true for those with neuromuscular diseases. Therefore, I ask: how much more difficult is it for those with more rare diseases to access the services to which they are entitled where there are not even NICE guidelines?

I welcome the proposals for a national neuromuscular services plan, but I ask the Minister to ensure that a simple handy guide is made available to GPs for them to use when a patient is first diagnosed to make sure that the patient gets access to physiotherapy support as early as possible. In that way, we can move to one consistent standard of service and improve the outcome for patients.

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.