Health: Neurological Services

Baroness Noakes Excerpts

Tuesday 31st January 2017 Lords Chamber

[Baroness Noakes (Con)]

My Lords, I congratulate the noble Baroness, Lady Gale, on securing this evening’s debate on neurological services. This is a large and important topic, and I shall focus my remarks on just one neurological condition: motor neurone disease. I thank the Motor Neurone Disease Association for providing me with a briefing for this evening.

The Minister is relatively new to his brief as a Health Minister, and he might not be aware of this devastating condition. In fact, the low prevalence of motor neurone disease, affecting around 5,000 adults in the whole of the UK at any one time, means that it is not well understood within the NHS. In turn, the services provided by the NHS for motor neurone disease sufferers are often inadequate.

While its prevalence is low, those who encounter the disease among family, friends or colleagues—as I did over 30 years ago—will never forget it. It is a horrible and rapidly progressive neurological disease that affects the brain and spinal cord. Muscles fail, leaving sufferers unable to walk, talk and eventually breathe. It can also affect thinking and behaviour. Most are fully aware that their bodies are failing and that they will die from the disease. There is no cure for MND: one-third of sufferers are dead within one year of diagnosis and half are dead within two years. This is why the availability of high-quality neurological services is vital.

It is clear that neurological services have been downgraded by NHS England at the national level. There is no longer a national director for neurological services, and this has led, as the Public Accounts Committee in another place predicted in 2015, to a loss of clinical leadership and accountability. With neurology not embedded in the leadership structures and accountability frameworks of the NHS in England, it is not surprising that there is disengagement at the local level within clinical commissioning groups. Without national leadership, clinical commissioning groups will not focus on services for lower-prevalence, complex diseases with the same urgency as those for services which have vocal national champions.

The result is clear. Fewer than one in six CCGs has assessed costs relating to the provision of neurological services, while only around one in five has assessed the number of people using those services and the prevalence locally of neurological conditions. Only one in three bothers to ask patients what they think about the services. The Minister should not be surprised that the Neurological Alliance found that nearly 60% of patients had experienced problems in accessing the services or treatments that they needed.

I do not generally get concerned about the so-called postcode lottery in the NHS. I believe that it is an inevitable part of a devolved NHS, with power in the hands of local clinicians and organisations, that there will not be a uniform service across the NHS. Local areas will set their own priorities. But I cannot begin to defend what is happening in neurological services. It is shocking. One-fifth of CCGs have no local consultant neurological services whatever and the majority do not provide more than 80% of appointments locally. I ask the Minister to contemplate what this means for a motor neurone disease sufferer seeking a diagnosis or specialist treatment against the background of a progressive and fatal disease.

The story does not end there. The most recent attempt to look again at what the NHS does, via sustainability and transformation plans, seems largely blind to neurology and had little input from specialists in this area. These plans will be driving service provision in the future, and unless NHS England wakes up to the lack of focus on neurological services, the future will be even more bleak for those with MND.

There are also problems with specialised commissioning, which impacts MND sufferers who at times need to rely on nationally commissioned services. The Health and Social Care Act 2012 brought in a definition of a specialised MND clinic, and the NHS is required to provide clinics throughout England to that standard. NHS England has failed to do this and many of the clinics would not exist without the Motor Neurone Disease Association, which has been forced to fund what the NHS should unambiguously have been funding.

Those suffering from motor neurone disease face many other problems within the NHS in England, in particular as continuing healthcare packages are often delayed. Delay is a common strategy in the NHS for keeping financial pressures at bay. I am well aware that the financial pressures facing the NHS are acute, but financial pressures must not excuse delaying CHC assessments for progressive diseases. The Continuing Healthcare Alliance found that only 14% of the CCGs which responded to its survey last year kept to the 28-day timeframe and that the longest delay was 255 days. People with motor neurone disease cannot wait that long.

Motor neurone disease may not affect many people—but when it strikes, the consequences are terrible. This is precisely when the NHS is most needed and neurology services are essential. I am clear from the briefing that I have received that the NHS is failing MND patients with these services. I hope my noble friend the Minister can tell the House this evening that the Government understand the problems, that they recognise that these are very real issues and that they will tell NHS England to sort neurological services out.