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.