Thursday 11th June 2015

(9 years, 6 months ago)

Lords Chamber
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Asked by
Lord Wills Portrait Lord Wills
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To ask Her Majesty’s Government what steps they are taking to encourage innovation by NHS England.

Lord Wills Portrait Lord Wills (Lab)
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My Lords, I start by welcoming the Minister to his new role and to what I understand will be his maiden speech. We overlapped for one Parliament in the other place, where he had a reputation as a thoughtful and conscientious Member of Parliament. Since then he has made a distinguished contribution to the work of the NHS. I am sure that he will make an equally distinguished contribution to the work of your Lordships’ House, and I am very much looking forward to his maiden speech.

It is generally accepted that the NHS is under unprecedented pressure from a combination of progress, a population living longer and longer, and extraordinary advances in medical science and technology, coupled with the need for rigorous discipline in public finances and with ever-increasing public expectations of what healthcare should deliver. All this taken together means that the NHS faces complex and difficult decisions in every area of its work. This Government in their previous incarnation between 2010 and 2015 frequently said that their approach to tackling these challenges was based on the principle of doing more for less.

It is clear that innovation has a critical role to play. In 2011 an important report from the Prime Minister’s Council for Science and Technology said that,

“success in delivering the government’s aspirations for healthcare … will depend on a fundamental cultural change within the NHS, supporting innovation in ways that increase health benefits while driving out costs across the system”.

I have asked for this debate today to highlight how in one particular case the Government and NHS England are signally failing to do this. That failure is causing unnecessary suffering and wasting taxpayers’ money, and it highlights what seem to be systemic problems with NHS England. I hope in his maiden speech that the Minister will be able to commit to some positive ways forward in addressing this failure.

Giant cell arteritis is a form of vasculitis, an inflammatory disease of blood vessels most commonly of the arteries in the head. It is, in effect, a stroke in the eye. If it is diagnosed in time it can be easily and cheaply treated with a course of steroids. Untreated, it leads to blindness in 25% of cases. It has been estimated that around 3,000 patients every year go blind as a result of giant cell arteritis—3,000 people losing their sight needlessly because doctors failed to diagnose their condition in time and provide sufficiently rapid treatment.

Why are thousands of these avoidable tragedies happening every year? It is partly because the symptoms are everyday. There are headaches associated with scalp pain, pain in the jaw or tongue, and it is also common to see low-grade fever, loss of appetite, depression and tiredness. Once symptoms present, an early temporal artery biopsy or ultrasound can confirm a diagnosis and enable urgent treatment to start to prevent blindness. However, far too often GPs miss the symptoms, because this is often an affliction of older people and the symptoms are too commonly categorised as merely the inevitable aches and pains of ageing.

For four years I have sought an estimate from the Department of Health of the cost of such unnecessary loss of sight, and as far as I am aware it still has not produced one. Maybe the Minister will surprise me today. My rough calculations—very rough—suggest that it could be around £1 billion over the lifetime of this Parliament. That is based on the fact that the average annual costs to the Exchequer of blindness for an individual exceed £25,000 a year, so the costs of those 3,000 people going blind every year unnecessarily run to £75 million a year. Of course, this cost accumulates year on year, so over five years the total costs of such unnecessary blindness could come to between £1 billion and £1.1 billion. When that is offset against the costs of the steroids, that still leaves a net cost to the taxpayer of around £1 billion.

However, that is just a calculation of the financial costs. It takes no account of the human costs: the incalculable misery of those losing their sight, mostly pensioners, already at the most vulnerable stage of their adult lives. It does not mean the loss of vision alone, although that is tragic enough. It increases mortality and the risk of cardiovascular complications, such as heart attacks and strokes, and of aneurysms. It also means all too often the loss of independence, with elderly people who had been able to live in their own homes now being forced to go into residential care.

This is not inevitable. There are significant differentiating characteristics about the symptoms, so giant cell arteritis ought to be easy to diagnose as long as GPs are sufficiently sensitised. Headaches are common, but sudden onset headaches and headaches over the temples, for example, are less common. Those categories of headache are key indicators of giant cell arteritis. For example, jaw and tongue pain is a red flag warning.

Dedicated clinicians and support groups have been working tirelessly to reduce the suffering from this avoidable loss of sight by raising awareness among clinicians. The British Society for Rheumatology, British Health Professionals in Rheumatology and the Royal College of Physicians produced guidelines for the management of this complaint five years ago, but the persistence of problems with diagnosis and appropriate treatment suggests that these guidelines are not having the desired effect.

Recently, a remarkable clinician, Professor Dasgupta, has pioneered in Southend a cheap and cost-effective fast-track pathway for diagnosis and treatment. The results of this pilot have been validated by the Department of Health and they show a dramatic reduction in the numbers suffering sight loss from this condition. Rolled out nationally, it would save thousands of people from losing their sight needlessly, it would spare them and their families misery and suffering, and it would save the taxpayer around £1 billion over the lifetime of this Parliament.

In January last year, Sir Bruce Keogh, the medical director of NHS England, wrote to me saying that this fast-track pathway,

“represents a new way of doing things which is better and costs no more. We must learn from such innovative examples”,

and he suggested a meeting, saying that it should,

“seek to determine how to disseminate this good practice effectively. It is by finding ways of smoothly industrialising these new ways of doing things that we will improve quality in a way that is cost effective”.

At this point it seemed that NHS England was providing a model for innovation in healthcare. Sadly, it has not turned out to be quite like that. That meeting was held in April last year, and 20 minutes into it one of the patients’ representatives, an experienced and distinguished journalist, passed me a note that read simply, “We’ve got a problem”—and indeed we had. The NHS officials at the meeting clearly saw the smooth industrialisation and effective dissemination of the fast-track pathway as a very low priority. In the end, as a compromise it was agreed not that there should be a national rollout industrialising the fast-track pathway but that milestones towards it should be agreed by last summer. That never happened. When I tried to find out why, I was told it had never been agreed, even though I and the three other people present at the meeting who were not NHS officials are all clear that it was.

Instead of finding a way to industrialise this new way of doing things, as Sir Bruce Keogh said he wanted to do, NHS England and the Government seem to be relying on three alternative approaches, none of which represents anything like an adequate response. First, there are the guidelines, which are clearly not having a significant impact on the problem. Secondly, NHS England has been developing proposals to establish local rheumatology networks. On 18 March this year, Sir Bruce Keogh wrote to me, saying that,

“discussions on the development of these networks have started in a number of areas”.

In the 17 months since Sir Bruce told me that he wanted,

“to disseminate this good practice effectively”,

all that has happened is that discussions have started on localised rollouts. In that time a national industrialisation of this fast-track pathway could have prevented more than 2,000 people losing their sight. Finally, NHS England has invited Professor Dasgupta to contribute to the NHS innovation exchange portal. I wonder how much greater an impact NHS England thinks that portal will have over and above the existing guidelines—not very much, I would guess.

Why is more not being done? Ministers have said that the Health and Social Care Act 2012 means that this is now entirely a matter for NHS England. NHS England has produced two excuses. The first is that the Health and Social Care Act prevents it taking any action to ensure a national take-up of the fast-track pathway. It is not clear to me why this is. Admittedly the Act is extremely complex and impenetrable. Part 1 on its own runs to 110 pages. I have asked Sir Bruce Keogh to tell me which part of the Act he is relying on to make this assertion, but I have not yet had a reply.

However, the NHS England website pages on commissioning seem to suggest that it could do more. It says that,

“for rare disorders, services need to be considered and secured nationally”.

It does not say what is meant by “rare”, but NHS England always cites research showing that the incidence of giant cell arteritis is 20 per 100,000 people, which sounds rare to me. It seems that, on its website at least, NHS England concedes that it could be doing a lot more than it is telling me it can. In any event, if it turns out that the Health and Social Care Act does prevent NHS England taking the kind of action Sir Bruce Keogh said he wanted to see, there is clearly something wrong with that Act, and the Government should seek the first available legislative opportunity to amend it accordingly. In these circumstances, I hope the Minister might be able to commit to doing that if it proves necessary.

For the second excuse, and I am winding up now, I will quote Sir Bruce Keogh again. He said:

“Changing clinical pathways and processes require dedicated resource. Given the scale and complexity of the challenges facing the NHS, clinical and management resource has to be prioritised. Not everything can be done everywhere at once”.

As a generic statement, that sounds reasonable enough. Who could disagree with it? But it fails to explain why the fast-track pathway is such a low priority when it could rapidly save resources that could then be directed elsewhere. Sir Bruce’s remarks about industrialisation last year suggested that it would be given a higher priority, precisely for that reason. Can the Minister explain what has changed? Crucially, that generic statement fails to explain why the avoidable loss of sight appears to be given such a low priority by NHS England. Again, I would be grateful if the Minister could shed any light on why that is so.

This case history suggests that NHS England is afflicted by a bureaucratic sclerosis that prevents it innovating in the way that the NHS so desperately needs. Moreover, it is clearly being hamstrung by the Health and Social Care Act either because there are real constraints on it, which hinder the effective dissemination of innovation, or because the legislation is so flawed that it is impossible to understand and is being used as an excuse for that bureaucratic sclerosis.

I hope that the Minister will use the occasion of his maiden speech to agree to take some action to sort out this profoundly unsatisfactory situation and to ensure the delivery of what Sir Bruce Keogh pledged in January 2014: to disseminate the good practice of this fast-track pathway effectively, and to find ways smoothly to industrialise it. Perhaps a good first step would be for the Minister, together with Sir Bruce Keogh, to agree to meet me and clinicians’ and patients’ representatives to discuss how best we can make progress. I hope that he will agree to do so, and I look forward to his response.