NHS Risk Register

Lord Evans of Rainow Excerpts

Wednesday 22nd February 2012 Commons Chamber

[Andy Burnham]

Let me make this point, and I will give way in my own time.

People talk of confusion and drift, of a huge loss of experienced staff and established relationships and of an NHS in which no one knows who is making the decisions. That leads to concerns about the risks being run with our NHS—risks to patient safety, service standards and in relation to the efficiency challenge. The chief executive of the NHS confirmed that to the Public Accounts Committee when he said:

“I’ll not sit here and tell you that the risks have not gone up. They have.”

So, that is a fact. The Prime Minister who promised to protect the NHS has put it at risk. That much is clear, but what are the precise risks that the Health Secretary and the Prime Minister are taking with the NHS, and how serious are the risks? Does not the public have a right to know what they are? You would think so, would you not, Mr Speaker, given how much the NHS matters to people and how utterly so many people with long-term illnesses and disabilities depend on it.

[Graham Evans (Weaver Vale) (Con)]

When the right hon. Gentleman was Secretary of State he refused a freedom of information request to publish risk registers in September 2009. Why was that? Was he aware of the request, and why did he not publish?

[Andy Burnham]

I will come to that in a moment. If the hon. Gentleman is patient, I will answer his point directly.

Given the risks that are being taken, and given how much the NHS matters to people and how utterly they depend upon it, particularly those with long-term illnesses and disabilities, one would think they had a right to know about the risks that the Secretary of State is running with their health service. Well, one would be wrong. Instead, Members of this House and of another place have been asked to approve the most far-reaching reorganisation of this country’s best-loved institution by a Government who have not had the courtesy to give them the fullest possible assessment of its potential impact on the NHS.

Oral Answers to Questions

Lord Evans of Rainow Excerpts

Tuesday 10th January 2012 Commons Chamber

[Paul Burstow]

As far as I am aware, no assessment has been made to analyse the number of unpaid interns. What is very clear, however, is that when NHS organisations are using people to provide services as volunteers, that is clearly separate from what would be regarded as paid employment. That is clear in the strategy we set out last year and clear in the advice and guidance provided by the Cabinet Office as well.

[Graham Evans (Weaver Vale) (Con)]

2. What recent representations he has received on access by NHS patients to drugs invented and developed in UK laboratories; and if he will make a statement.

[The Secretary of State for Health (Mr Andrew Lansley)]

Representations received have strongly supported the Government’s “Strategy for UK Life Sciences”, which was published on 5 September. Speeding up clinical trials approval, enabling the unique NHS clinical databanks to support research, the early adoption of new medicines and other initiatives will bring NHS patients the fullest benefit from innovation and will promote growth in UK biosciences.

[Graham Evans]

What steps are being taken towards closer collaboration between the NHS, industry and our world-class universities to drive improvement and innovation in the NHS for the benefit of current and future NHS patients?

[Mr Lansley]

I am grateful to my hon. Friend. He rightly highlights an area where we are clear that innovation can be considerably supported, and not only by the academic health science centres, which were established under the last Government. As the life sciences strategy set out in early September made clear, we want to create academic health science networks across the NHS so that higher education, industry and the NHS can work together to bring about the greatest possible innovation to the benefit of patients.

Manufacturing

Lord Evans of Rainow Excerpts

Thursday 24th November 2011 Commons Chamber

[Guy Opperman (Hexham) (Con)]

I beg to move,

That this House has considered the matter of the future of manufacturing.

Manufacturing should be at the heart of any long-term plan for economic growth. It is a sleeping giant that, if revived, would become the backbone of a strong UK economy. It is entirely right that, five days before the autumn statement, we should have the opportunity to debate the subject in broad terms in the House. I thank the Backbench Business Committee and the House of Commons staff for their assistance in bringing this matter before the House and, in particular, I pay tribute to my co-sponsors, the hon. Member for Huddersfield (Mr Sheerman), my hon. Friend the Member for Warwick and Leamington (Chris White) and the hon. Member for Burnley (Gordon Birtwistle), who have adopted an all-party approach to this problem which affects us all.

It is well known that I used to be a jockey and a lawyer, so it is legitimate to ask how on earth I can have any credibility in speaking about manufacturing. All MPs do, because we all have small and medium-sized enterprises that make something in our constituencies. We all have credibility on this issue.

My family came to this country as immigrants. They were engineers, specialising in gears. In May 1924, in the depths of a very bad recession, they set up Opperman Gears in a basement in Albemarle way in Clerkenwell. It had four staff—my great-grandfather and his three sons—who worked in the basement on two lathes, three milling machines and a couple of tools. They had borrowed £110 from a distant relative to set up the business. It grew rapidly and by early 1939 it moved to Newbury, where my family set up a larger firm that was able to produce the parts for the Wellington bomber with its long-term partner, Vickers.

We do not run that company any more, but I should declare that I am a shareholder in the small manufacturing business run by my father and that my family members are involved in a number of different manufacturing businesses up and down the country. I should also make it clear that I resigned my directorship of the family business in 2009 and am not paid by it in any way.

I should also declare that I am a wholehearted supporter of my local manufacturing businesses in the north-east, notably Kilfrost, EGGER, SCA, Agma and others, and their financial support allowed the charitable functions I ran this summer in the constituency. I should declare an indirect link, in that a director of one of those firms made a contribution to my association.

I hope I am doing my bit to try to create jobs. I was the second Member of this House to employ an apprentice and I urge those Members who have not to do so. She is a young lady who works in my office in Hexham and who has been with me now for nearly a year, and is doing extremely well. Members of all parties can take on apprentices—it is allowed under the rules—and I urge them to do it.

The scale of the manufacturing deficit is huge. The nations that expanded post-war specialised in and pushed manufacturing. Those nations—Germany, Japan, Taiwan, Korea and China—knew what they were doing. Today, the services sector alone can prop up Britain no longer, and there is a strong argument for greater industrialisation and changing things. We have seen the demise of manufacturing—it accounted for 20% of gross domestic product in 1997 and now accounts for 11%—and there is a strong argument for specialising not just in high-tech industry but in other industries, which are often derogatively labelled “metal-bashing”. Their products are unassuming, even if they are created by some of the most precise machines on the planet.

My constituency is in Northumberland and my four biggest non-public sector employers are all manufacturers. The north-east might be the birthplace of ships and steel, but we have reinvented ourselves. I was pleased to see SCA recognised in the Government-backed “Made by Britain” awards, which were so ably organised by the hon. Member for Huddersfield. That company employs about 435 local people in Prudhoe, including 60 apprentices. It could not be doing any more to support its local community. It does not make glamorous, eye-catching products—or perhaps some people think it does—but it produces one in every five toilet rolls in this country, as well as vast quantities of paper towels. I am sure we all agree that those are essential products.

[Graham Evans (Weaver Vale) (Con)]

Flushed with success.

[Guy Opperman]

It is, indeed, flushed with success, as my hon. Friend so ably quips from the sidelines—as always, he is on the money. The wood pulp goes in at one end of the factory and paper products come out at the other. The machinery is highly technical; this is modern manufacturing in the modern age.

In this time of austerity, I am extremely proud that the north-east has a positive balance of trade and is the only region consistently to do so. We should trumpet the fact that the North East chamber of commerce is the only regional chamber of commerce in the country. It represents more than 4,000 businesses and covers more than 30% of the region’s work force. If I had to single out one local concern that it has highlighted to me from the multitude of things it would like to be done, it would be to urge the Minister to conduct the review that it is hoped will be undertaken of the planned carbon floor price and other climate change and energy-related matters.

How are we to address the manufacturing deficit? I have three main suggestions. First, we need a Minister for manufacturing. That is not to decry the efforts of the Minister with responsibility for business or the Business Secretary, both of whom are worthy men, or those of any parties in that Department. However, the fact remains that, according to the House of Commons Library, there has not been a Minister for manufacturing since 1945.

--- Later in debate ---

[Graham Evans (Weaver Vale) (Con)]

I congratulate my hon. Friend the Member for Hexham (Guy Opperman) on securing the debate. Apart from a brief spell stacking shelves in my local Co-op in Poynton, I have worked in the manufacturing industry for my entire career. Interestingly, my first manufacturing job as a young man was working for BAE Systems on the mark 3 airborne early warning Nimrods. After a lot of taxpayers’ money, that was rightly cancelled because it was over budget and out of date and did not work.

When Britain was described as the workshop of the world nearly a century and a half ago in 1870, the UK accounted for almost half—46%—of the world’s manufacturing output. Today, that title has been bestowed on China, which produced a fifth of the world’s manufactured trade in 2007. The term seems to have lost some of its meaning over time, as has the notion of Britain as an industrial nation.

Everyone appears to believe that the UK is doing fine when it comes to manufacturing, citing the fact that we are the fifth largest manufacturer in the world in terms of value of output. That attitude has bred complacency and allowed successive Governments to believe that they are doing enough to maintain that position. However, that belies the truth. If we measure manufacturing in terms of per capita value added, we realise that Britain is only around 12th in the international league tables, and suddenly the picture changes dramatically.

It is clear that if we are to rebalance our economy, much more must be done to push us up the rankings. That means providing support for all forms of manufacturing, rather than just the high-tech sectors that seem to be so fashionable at the moment. It has been calculated that those sectors make up only 14% of British manufacturing and it has been argued that the support for manufacturing should be based on value, not the complexity of the product. For example, the UK still produces basic metal turbine blades, but they are cut by some of the most precise machines on the planet. The product is simple but very high value, thanks to the advanced production process.

There is no question but that such a shift must take place. The financial crisis made most people aware that the UK cannot rely on the financial services trade surplus to prop up the industrial trade deficit. However, it is less well known that, according to the Office for National Statistics, even the financial sector’s maximum export volume of £55 billion in 2008 was eclipsed by manufacturing’s £195 billion of exports.

The problem is twofold. First, our manufacturing ability is only rivalled by our insatiable appetite for other people’s goods. That has led to the latest trade in goods deficit of almost £100 billion—a new record. Secondly, Britain has grown complacent. Our manufacturing output has remained constant for the past 13 years under Labour, which is a reduction of £3.5 billion per annum in real terms.

Where did it all go wrong for UK industry? Contrary to popular assumptions, although some deindustrialisation did occur under Margaret Thatcher, the bulk of the factory closures came later. Indeed, when Labour took office in 1997, manufacturing comprised exactly a fifth of the UK economy. By 2007, it had declined to an eighth. In comparison, under the whole of the Thatcher Administration, the decline was 3.3%. The loss of our manufacturing capabilities is a very recent concern, which should fill us with a certain level of optimism.

[Mr Adrian Bailey (West Bromwich West) (Lab/Co-op)]

So far, the debate has been conducted on a reasonable cross-party basis. However, given the fact that the hon. Gentleman has made a political assertion, can I point out that in the black country, at least four huge manufacturing employers—Round Oak steelworks, Patent Shaft steelworks, Bean Cars and Cannon—were closed during the Thatcher era? That had a devastating impact on the level of employment in the black country.

--- Later in debate ---

[Graham Evans]

I am grateful for the hon. Gentleman’s intervention. At the beginning of my speech, I made the point that all Governments of all political persuasions have contributed to the overall decline. I take on board the closures in his constituency. All Governments need to learn the lessons of the past, but that does not mean that we should underestimate the problem.

Let us consider energy-intensive manufacturing sectors, which include the chemical, steel, glass and paper production industries among others. The chemical industry is of particular importance in my constituency, where Tata and INEOS Chlor are still major employers in Northwich and Runcorn. According to Waters Wye Consulting, policies such as the EU’s emissions trading scheme and the unilateral carbon price floor mean that the average energy-intensive company’s energy bill will rise from £3 million now to £17 million in 2020—an untenable level for the majority of these firms, which simply cannot afford to continue production in the UK. Proponents of these policies argue that energy-intensive sectors account for only 1% of GDP and so do not matter. If we quantify that figure, it equates to a potential loss to the UK economy of £15 billion and 290,000 jobs. More widely, the Royal Society of Chemistry claims that £220 billion of GDP and 5.1 million jobs are partly reliant on UK chemical research alone. Clearly, the visible threat to UK manufacturing is only the tip of the iceberg, but the problem is that most people do not realise that.

British industrial decline, relatively speaking, is in sharp contrast to the experiences of our neighbours—in particular, Germany. German long-term support for manufacturing means that it now possesses the economic clout to dominate Europe. Given the UK’s and Germany’s widely different starting positions 60 years ago, it is clear that it has done something that we have not, and that something is valuing industry. From post-war restructuring to reunification, Germany has always recognised that manufacturing was the backbone of its economy and therefore never enacted policies that would endanger it. Indeed, political infrastructures were set up to nurture industry, especially mittelstand—or, as we refer to them, small and medium-sized companies or SMEs. Foremost among those tools stands KfW, the state-backed bank that ensures that mittelstand can access funding even when the commercial banks are unwilling to lend. The value of such an institution was seen in the financial crisis. According to its accounts, in 2010 KfW financed a record €28.5 billion for SMEs, amounting to approximately 94% of all its commitments for the year. Without KfW, the potential for many extra jobs and exports would have never been realised for Germany.

It is hard to understand how far the value of German industry goes. Youngsters are encouraged from an early age to appreciate the importance of making things.

[Gavin Williamson (South Staffordshire) (Con)]

Does my hon. Friend agree that one of the key elements of Germany’s success is its investment in research and development? We need to be encouraging that. Jaguar Land Rover is building a new factory in my constituency and investing in R and D, and the Government could go a long way towards helping that by reviewing R and D tax credits, which the Treasury is considering at the moment.

--- Later in debate ---

[Graham Evans]

I agree with my hon. Friend. We have a reputation for very good, world-beating research and development, but it goes beyond that—when we have discovered these things, we still have to ensure that we make them in this country.

The Germans try to ensure that their young people appreciate manufacturing. Eliciting such a response from British children, compared with their counterparts in Germany, is increasingly difficult as they grow up. Initial curiosity about industrial work might be dismissed as selling themselves short by parents and teachers, and by the time the most able leave school, university is the only option, with apprenticeships considered by some to be second rate. The closest many of the next generation get to manufacturing is printing off a computer document. Little wonder that youth unemployment hit 1 million last week; many do not have the skills needed by manufacturers, thus further encouraging those manufacturers to relocate their businesses elsewhere, to the increasing detriment of British growth. As I have repeatedly said in this Chamber, we need to educate our children in a manner that will enable them to become the engineers, scientists and entrepreneurs that this country needs to pay its way in the world.

With the average age of those in industrial employment at 40 and rising—50 in some sectors, such as chemicals—drastic action is required. British manufacturing is at a crossroads. It can grow, bringing jobs to those who need them and contributing to reducing the deficit, or it can decline further, with valuable businesses permanently lost. There is reason to believe that the former positive outcome is more likely if we commit to making it happen. The Government have made a strong start. That this debate is happening is hugely positive and shows that we recognise the seriousness of the problem. The solutions that we need involve major changes both culturally, in widening our appreciation for manufacturing, and practically, in creating a more positive environment for industry. Let us make it in Britain. Let us make Britain great again.

--- Later in debate ---

[Gordon Birtwistle]

I totally agree with my hon. Friend and I will come on to an initiative in my constituency related to that suggestion.

In my constituency we have Burnley college, a joint FE-HE campus working with local firms to train highly skilled youngsters to be ready for the world of work. We are also getting a university technical college that will bring young people into the industrial life. Burnley college has made huge leaps in changing the perception of manufacturing locally among young people, and if the model the college uses were introduced across the UK, it would go a huge way towards really changing the perception of manufacturing at a national level. More schools and colleges need to start joining up with local businesses to provide youngsters with the knowledge and experience that will help them in the world of work. Too many children do not have any experience of working, or of the personal and other skills required. I will continue to encourage the Government to introduce impartial careers advice from the age of 11. Indeed, we should start careers advice long before young people go to secondary school.

[Graham Evans]

Is the hon. Gentleman aware of the Manufacturing Institute’s Make It campaign, which is specifically designed to enable young people in what used to be year 3—now year 9, I think—to experience as they take their options the delights of working in the manufacturing industry?

[Gordon Birtwistle]

Yes, I am aware of that, and it is a great thing. I encourage the Government to encourage such things, and we should also give careers advice to young people at 11.

Manufacturing must cease being perceived as a career avenue for low achievers, and the Government must work harder to ensure that perception and reality are closely matched. The culture in our schools must change, and the Government can help with that. There is so much emphasis on how many children can get to Oxbridge but there is never a fanfare about how many get on to high-skilled training programmes in the manufacturing industry, such as those with Rolls-Royce, BAE Systems or Aircelle in my constituency. Business must recognise that a new role is emerging, and UK manufacturing must ensure that it sells its career and employment possibilities to young people.

Trade finance also plays a huge role in the export cycle, but small and medium-sized enterprises often find raising the finance overly complex because of the myriad requirements on both financial institutions and Government agencies. The manufacturing industry in Burnley would like the Export Credits Guarantee Department to work more with financial institutions on initiatives to support exporters, particularly small businesses, many of which would love to export but find it difficult. For example, What More, an SME in my constituency that makes plastic buckets, washing-up bowls and lunch boxes that are sold widely in Tesco, is taking on the Chinese. The Chinese used to control that market but the company now exports to 38 countries, including China, and would like to export further afield. What More tells me that with an export credit guarantee it could export to another 25 countries. It employs 160 people and has invested £16 million over the past few years.

It is critical that the Government, as a big purchaser of manufactured goods, buy British-made goods. I was extremely disappointed by the decision on the Thameslink contract. I do not know how it happened. I was not a Member of Parliament during the consultation and quotation on the Thameslink trains but I was concerned that the contract was placed with Germany. I do not understand the European rules but I was extremely concerned. Importing trains when we make our own does not stack up. I am pretty sure that the Germans and the French do not import their trains. They seem to find a way around these rules to ensure that the same does not happen there. Furthermore, a £1 billion order for Chinook helicopters was sent direct to Boeing despite there being a helicopter company in this country with a licence to build Chinooks. That would have saved us £500 million on our balance of payments.

I have a couple of suggestions for the Minister. First, we should return the capital allowances scheme to enable companies to invest and get the capital allowances on the new equipment that they buy. There would be a massive investment in new plant and investment if the capital allowances were returned. Secondly, as my right hon. Friend the Member for Haltemprice and Howden (Mr Davis) said, tax rebates on research and development should be increased in line with the rest of the world and with what is needed in this country.

Reform of Social Care

Lord Evans of Rainow Excerpts

Monday 4th July 2011 Commons Chamber

[Mr Lansley]

As my hon. Friend will know, Tom Hughes-Hallett, the chief executive of Marie Curie Cancer Care—who is leading the palliative care review—has engaged fully with Help the Hospices and the hospice movement. I understand from my conversations with hospice representatives over a number of years that they do not want their funding to be subject to the vagaries of public expenditure. Individual block grants that vary from year to year give them no confidence about the services that they provide. They do not want additional resources as much as clarity about what resources will be provided for the individuals who seek their care. They particularly hope that there will be a corresponding transfer of resources to hospices which provide services that replace the NHS and support people at home, as many are increasingly doing.

[Graham Evans (Weaver Vale) (Con)]

I have four Southern Cross homes in my constituency. Does my right hon. Friend agree that the Southern Cross situation highlights the need for a dedicated financial regulator for social care services?

[Mr Lansley]

As I said earlier, this is one of the issues on which I hope we will have further discussion as part of the debate on wider social care reform leading to the White Paper.

NHS Reorganisation

Lord Evans of Rainow Excerpts

Wednesday 16th March 2011 Commons Chamber

[Rosie Cooper (West Lancashire) (Lab)]

I have spoken in this place on several occasions about the deeply disturbing reforms that the Government are proposing to our national health service. On those occasions I have accused the Secretary of State of glibness and hubris, and as each day passes, as each new piece of information comes to light and as we scrutinise the detail of the Health and Social Care Bill, he proves my assertions right. He currently presides over what I can only describe as an unholy mess that will have huge negative consequences for the NHS and the people who love it and depend on it.

I tell the Secretary of State that the Opposition have seen through his plans, and the Liberal Democrats, who are on his side of the Chamber, see through them as well. Many of his colleagues are very nervous about them, and yesterday the British Medical Association and medical professionals made a clear and unequivocal statement that they, too, see through them. As the plans unfold further, I can tell hon. Members that patients and the British public see through them as well.

Despite the broken promises, the Secretary of State and the Prime Minister seem to think that their NHS reforms are a good idea. I am not sure that they are 100% convinced, though, given that they did not seem confident enough to share the details of their plans with the British public before the general election. In fact, the Prime Minister was very clear in his promise to the British people:

“no more pointless top-down reorganisations”

of the NHS. He even said:

“When your family relies on the NHS all of the time—day after day, night after night—you know how precious it is.”

How quickly forgotten those words were.

Some people felt reassured that, whatever else might happen if the Tories were elected, the NHS would be left untouched. How wrong they were. Today we find the NHS in a state of turmoil and facing massive reorganisation, with hundreds of health workers laid off and its very future threatened by a desire to set up a commercially driven market in health care. This very lunchtime, the Prime Minister said, “We are not reorganising the bureaucracy of the NHS. We are abolishing the bureaucracy of the NHS.” The bit he left off was that private providers would be doing that work. Who is he kidding?

[Graham Evans (Weaver Vale) (Con)]

rose—

[Dr Daniel Poulter (Central Suffolk and North Ipswich) (Con)]

rose—

[Rosie Cooper]

I give way.

[Graham Evans]

I thank the hon. Lady—

--- Later in debate ---

[Mr Deputy Speaker (Mr Lindsay Hoyle)]

Order. The hon. Lady will have to sit down during the hon. Gentleman’s intervention.

[Graham Evans]

I am new to the House, but I seem to recall the right hon. Member for Leigh (Andy Burnham), who was then the Secretary of State for Health, saying that we should

“celebrate the role of the private sector in the NHS.”

What has changed for Labour Members? [Interruption.]

[Rosie Cooper]

I am sorry, I did not hear the end of that.

[Graham Evans]

When he was Secretary of State, the right hon. Member for Leigh said that we should be celebrating

“the role of the private sector in the NHS”.

What has changed since he made that comment?

[Rosie Cooper]

The health service was not an issue at the general election, and why? Because people broadly supported it and were not worried about the state that it was in. Government Members must listen to the furore that will happen and prepare to defend their seats in light of the decisions that they take now.

Neuromuscular Care (North-West)

Lord Evans of Rainow Excerpts

Wednesday 9th February 2011 Westminster Hall

[Graham Evans (Weaver Vale) (Con)]

I thank Mr Speaker for allocating time for this important subject. I pay tribute to the excellent Muscular Dystrophy Campaign, which does such brilliant work in this field and has assisted me in preparing for the debate. This morning, I will bring to the attention of the Minister the significant gaps in specialist neuromuscular care services in the north-west region that many people living with muscular dystrophy and related neuromuscular conditions currently experience. Vital review work undertaken by the NHS North West specialised commissioning group in the past six months is encouraging, but families need to see it translated into real improvements to services. It also provides an opportunity to improve patient outcomes and to reduce the amount of money spent on unplanned emergency admissions to hospital for people in the north-west with neuromuscular conditions.

Let me briefly outline my personal connection to muscular dystrophy. I am 47 years old, and I had a cousin, Stephen Payne, who, if he was still alive today, would be of the same age. He was diagnosed with Duchenne muscular dystrophy at the age of six, and I remember the devastating effects that it had on our family. This was in the late 1960s, when not a lot was known about the condition. I remember my uncle, Mr Barrie Payne, taking his son to Harley street for a diagnosis. I am afraid to say that it was not good. None the less, Mr Barrie Payne is a fighter and a campaigner and he threw all his energies into fundraising to see if a cure could be found for Duchenne.

My very earliest memories, therefore, are of a family fighting and campaigning for a cure for that dreadful disease. I also have very early memories of politicians getting involved in this vital subject. I pay tribute to Lord Alf Morris of Manchester, who, at the time, was the MP for Wythenshawe. Coincidentally, Lord Morris’s sister lived on my council estate, and I remember him driving to our estate in his Wolseley car. At the time, those cars were for very special people. He came to see my family when he visited his sister and I remember thinking at the time what a special man he was. In those days, in the ’60s and ’70s, it was thought that politicians could help ordinary people from working-class backgrounds such as mine. I remember so well the work that my family and Mr Morris did to get a change in legislation. I am pleased to say that Alf Morris was behind the Chronically Sick and Disabled Persons Act 1970, which was the first Act in the world to give rights to people with disabilities.

I did my best to raise money for the muscular dystrophy charity. I used to sell pens, pencils, rulers and pencil cases in my school yard at primary school. Imagine a head teacher allowing a child to go into school with a bag full of goods to sell for cash in these politically correct times. Coincidentally, my head teacher lived next door to my cousin, Stephen Payne, and at school fairs he used every opportunity to raise money for muscular dystrophy.

My uncle continued to campaign to raise money and awareness. People in wheelchairs were often not allowed access to places such as airports and museums, which led to considerable arguments. My uncle rightly felt that people with disabilities should be allowed in. I am glad to say that in the 21st century, things are a lot different.

Stephen was a bright and articulate individual, and he was always forthright in his opinions. He was a Manchester City fan, while I was a Manchester United fan. When Manchester United got relegated in 1973, he certainly let it be known how pleased he was about that. Stephen died in California when he was 21. His peers died when they were in their very early teens, which just goes to show that palliative care and hydrotherapy can extend the lives of people with Duchenne.

The Muscular Dystrophy Campaign is the leading UK charity and focuses on all neuromuscular conditions. It is dedicated to improving the lives of all people with such conditions. Founded in 1959, the Muscular Dystrophy Campaign funds vital research, provides and supports care services and gives information, advice and direct help to individuals living with neuromuscular conditions. I am honoured to be a member of the all-party parliamentary group for muscular dystrophy, which has highlighted shocking gaps in service across the UK and continues to call for improvements in access to specialist neuromuscular care to follow up recommendations in the Walton report.

There are more than 60 types of muscular dystrophy and related neuromuscular conditions. It is estimated that more than 1,000 children and adults in every million of the population are affected by muscle-wasting neuromuscular diseases—in the north-west around 8,000 people in total. Such disorders can be genetic or acquired. A number of conditions, such as Duchenne muscular dystrophy, are particularly aggressive. They cause progressive muscle wasting, weakness, orthopaedic deformity and cardiac and respiratory compromise, and result in premature death. Many young boys in the UK with Duchenne muscular dystrophy are dying before they get beyond their teens; that is unacceptable.

Specialist multidisciplinary care has been developed by leading clinicians as the best model for delivering effective care for such complex multi-system diseases. The provision of expert orthopaedics and early cardiac monitoring and intervention has been shown to improve muscle function and maintain independent mobility. People with neuromuscular conditions, therefore, need specialist multidisciplinary care, support and intervention from a range of professionals and specialists. That was recognised as part of the specialised services national definitions set. Leading neuromuscular clinicians fought hard to get those services recognised as specialist by the Department of Health.

Specialised services are defined in law as services with a planning population of more than 1 million people, which means that a specialised service is not provided by every hospital in England. The SSNDS describes the services in more detail. The definitions provide a helpful basis for service reviews and strategic planning, which enables commissioners to make comparisons of activity levels and spend. They help with the identification of activity that should be regarded as specialised and therefore subject to collaborative commissioning arrangements. The 10 specialised commissioning groups, acting on behalf of the members of primary care trusts, are responsible for the commissioning arrangements for specialised services.

Neuromuscular conditions come under the auspices of a number of specialities; they are genetic conditions, so geneticists sometimes deal with patients. The conditions sometimes affect children, so paediatricians are involved. A number of the adult forms come under the heading of neurology. Some of the conditions require respiratory care, which is provided by a respiratory practitioner, and some are metabolic conditions such as Pompe, and patients are treated by specialists for metabolic disorders. Therefore, health care for people is quite fragmented, and that clouds professional responsibility. “Neuromuscular” must be recognised as a speciality along with neurology.

Dr Ros Quinlivan, a leading consultant in paediatrics and neuromuscular disorders, has outlined the effects of neuromuscular conditions and how they need to be managed:

“Neuromuscular conditions are rare and include: Muscular dystrophies, metabolic myopathies, congenital myopathies, inflammatory myopathies, Spinal Muscular Atrophies. Many of these conditions affect only skeletal muscle and thus cannot be considered to be neurological disorders, in fact skeletal muscle can be considered to be the largest organ in the body. Most neuromuscular disorders are genetic in origin and affect families, but the inflammatory myopathies are acquired and require specific treatment. Affected patients range from newborn infants to elderly people. The effect of many of these conditions is on the skeleton causing skeletal deformities due to muscle contractures and on the heart and lungs causing respiratory or cardiac failure which can significantly limit life expectancy.

The physical management of these disorders is quite distinct compared with conditions affecting either the nervous system or the musculo-skeletal system (bone and joints). Proximal and axial muscle weakness caused specific functional difficulties not seen in patients attending clinics in other specialist areas. The progressive nature of these conditions means that a multi-disciplinary approach to care, with experienced clinicians specialising in neuromuscular disorders, is essential to achieve the best outcomes.”

It is now felt by the clinical community that it is time to make a neuromuscular curriculum part of the medical career, to establish the neuromuscular field in its own right. The conditions have a lot in common, so it makes sense that they are treated by the same person. For example, some forms of limb-girdle muscular dystrophy exhibit similar symptoms to some forms of spinal muscular atrophy, but one is a muscle disease and the other more a neurological disease. They are long-term rare conditions, which makes them quite different from neurological diseases such as Alzheimer’s and Parkinson’s.

Neuromuscular services need to be commissioned on a regional basis. Currently they are commissioned by the 10 regional NHS specialised commissioning groups, with top-slicing of PCTs. That method of commissioning services for these rare and very rare conditions has been endorsed by a new body of experts, the British Myology Society. It makes no sense for one PCT to commission specialised services. Unlike conditions such as Parkinson’s or multiple sclerosis, there are no guidelines from the National Institute for Health and Clinical Excellence for these neuromuscular conditions, which presents real difficulties when trying to set standards of care across the country.

That situation has been a contributing factor to the postcode lottery that has arisen, and which was highlighted in the all-party group on muscular dystrophy’s Walton report, published in August 2009. That followed reports by the Muscular Dystrophy Campaign, as part of the charity’s “Building on the Foundations” campaign, which revealed the shocking lack of specialist care in many parts of the country. The lack of knowledge, training and skills in the sector is a significant concern. For example, there is no specific training or curriculum for neuromuscular services in the neurological field.

I am sure that hon. Members will share my concerns and the frustrations of people living with neuromuscular conditions in the north-west, as expressed in the Muscular Dystrophy Campaign’s patient survey in 2010. Deborah Hurst from Liverpool is affected by facioscapulohumeral—FSH—muscular dystrophy. However, she was not diagnosed with it until she was in her late thirties. She is now 47. Her two daughters were born before she was correctly diagnosed and one of them, who is now aged 25, has inherited the condition. Deborah says:

“I have two daughters and I knew one was affected, but the doctor told me I was fussing and silly. When I finally got them tested, he congratulated me on my actions, which I was very mad about as my daughter took her diagnosis very badly at the time and ‘congratulations’ was not what we wanted to hear.”

Mrs H from Lancashire has a son affected by a neuromuscular condition. She says that in her experience, GPs do not understand such conditions:

“My GP is very good but says, ‘We have about two hours of tutorial on muscular dystrophy in the whole medical training.’ So therefore they have no in-depth knowledge.”

Elaine Sands from Stockport is also affected by FSH muscular dystrophy. She does not receive any specialist care, but she would value the support of a neuromuscular care adviser. She says:

“As I am housebound, it would be nice to have someone give me physiotherapy and also some kind of visitor who knows about my condition, as I live alone and I would appreciate being able to talk to someone who understands the disease.”

However, the situation is different for Joanne Ashton. She has a five-year-old son, Liam, who has Duchenne muscular dystrophy. Through the specialist neuromuscular service at Alder Hey hospital, Joanne and her family have access to a specialist consultant, Dr Stefan Spinty, and to a full multidisciplinary service, including a neuromuscular care adviser. Joanne says:

“Shirley, our Care advisor, is fantastic. We only have to ask and she’s there. Liam had his wish granted, through the “Make A Wish Foundation”, because he was nominated by Shirley. So we are all impressed with the care advisors.”

The Muscular Dystrophy Campaign’s clinician-led report, “Building on the Foundations in the North West”, which was published in June 2009, made a number of findings about neuromuscular services in the north-west.

[Mr Gregory Campbell (East Londonderry) (DUP)]

I thank the hon. Gentleman for giving way and I congratulate him on securing this debate. He has rightly referred to the issue of care advisers. Obviously I understand that the north-west of England is his particular concern, but does he agree that if more emphasis were put on having excellent care advisers right across the UK, like the adviser who he has just referred to, that would help those who suffer from this condition immensely in trying to come to terms with it?

[Graham Evans]

I thank the hon. Gentleman for that intervention. I wholeheartedly agree. When someone is suffering from a condition, there is nothing quite like having people trying to help who understand what they are going through, both physically and mentally. So I wholeheartedly agree.

As I was saying, the “Building on the Foundations in the North West” report found that three out of four neuromuscular patients and their families have no access to a key worker or a care co-ordinator. About 6.5 regional care advisers are needed to serve the estimated 8,000 people —which is up from an earlier estimate of 6,500 people—in the north-west area who have a neuromuscular condition. Many of those people are simply not known to providers of health services.

The report also found that neuromuscular patients have very limited access to treatment, in particular to ongoing physiotherapy. Specialist physiotherapists are required to support outreach clinics and to provide training and professional development for community physiotherapists. In the north-west, two fifths of neuromuscular patients said that they do not receive enough physiotherapy.

Another finding of the report was that there is no dedicated physiological service for neuromuscular patients, despite the importance of such a service as part of multidisciplinary care for that patient group, who have rare and very progressive conditions. Those conditions are often genetic, there are no known cures and there are only limited treatments available. Greater support at the transition from paediatric services to adult services is needed, given the evidence that services are removed or greatly reduced when patients leave paediatric services, even though their needs may well increase given the progressive nature of many of these conditions.

[John Pugh (Southport) (LD)]

I thank the hon. Gentleman for giving way and I congratulate him on raising an important subject. In fact, he highlights a very significant problem. If I understand him correctly, he is saying that we need an adequate clinical network for the rare disease that he is speaking about and a range of providers need to be joined seamlessly, as it were, in some way for the good of the patient. Normally, we expect the strategic health authority to identify the failures to provide such a seamless service and to somehow levy the PCTs to deliver it, which the patients expect and deserve. Is he saying that the central problem is how such a service will progress under the new arrangements, when PCTs, SHAs and other such organisations, which are mandated to resolve these problems, no longer exist?

[Graham Evans]

I thank my hon. Friend for that intervention. He makes a very good point. The new arrangements are a threat, but they are also an opportunity, because services are currently provided by the PCTs but not all of them understand these neuromuscular conditions. The new arrangements are a real opportunity for the Muscular Dystrophy Campaign to get its point across, so that we get off on the right foot when the changes come in. However the GP-led consortia really need to understand and appreciate what is required. It is about having a holistic approach. Shortly I will discuss an excellent neuromuscular centre in Cheshire, which makes a huge difference to patients. It encompasses physiotherapy and the other aspects of care that make life so much more comfortable for those people who have muscular dystrophy.

[John Pugh]

I apologise to the hon. Gentleman and to you, Mr Davies, because I will not be able to stay for the duration of the debate. Consequently, I will not find the answer to the problem that I have just referred to.

[Graham Evans]

Okay. I thank the hon. Gentleman.

[George Hollingbery (Meon Valley) (Con)]

I apologise to my hon. Friend for intervening immediately after another intervention. He has just raised an interesting point about the transition from paediatric services to adult services. In my own area of the south-central region, which is clearly outside the geographical area that is the focus of this debate, we have recently managed to secure at least an advertisement for a new care adviser in the area. However, I understand that that care adviser will not be able to advise on paediatric conditions but only on transition and adult services. Is it not the case that we need a full range of services for all sufferers of this disease and a proper range of advice across all ages?

[Graham Evans]

My hon. Friend makes a very good point and I totally agree. A holistic approach is needed and there should be a seamless transition from being a young person and receiving paediatric services to receiving adult services. However, this point does not just apply to muscular dystrophy. For example, lots of mental health care services suffer from similar problems. Nevertheless, my hon. Friend is quite right. There should be a seamless transition from one service to another.

Greater support at transition from paediatric to adult services is necessary to provide evidence of services being removed or greatly reduced when patients leave paediatric services, even though, as I have said, their needs may well increase given the progressive nature of many of these neuromuscular conditions. There is a three-monthly transitional clinic in Manchester and a monthly transitional clinic that alternates between Alder Hey children’s hospital and the Walton centre, which are both in Liverpool. Both those services—in Manchester and Liverpool—are extremely vulnerable and entirely dependent on the availability of their respective consultants. A transitional clinic at Preston is evolving, but it is not formally funded and is based on the good will of the clinicians. The transitional clinic at Alder Hey children’s hospital is the only one that is attended by the required multidisciplinary team. None of the transitional services in the region is funded or appropriately staffed.

The Walton report, published in August 2009, expressed the concerns that the all-party group on muscular dystrophy developed as a result of its inquiry into access to specialist neuromuscular care. Martyn Blenkharn, chair of the Muscular Dystrophy Campaign’s North West Muscle Group, expressed in written evidence to the all-party group his frustrations about attempts to access NHS physiotherapy:

“No hydrotherapy available in the area - private arrangements can be made, but no assistance from NHS physiotherapists can be obtained. Compared with the previous PCT area (North Cumbria) which covered the area where I used to live, the service in my current PCT area (North Lancashire) is totally unsatisfactory - the quality of care from those who treat me directly is fantastic, but their hands are tied to provide what is really needed.”

The all-party group concluded in its regional summary about the NHS North West region:

“We heard from clinicians in the North West region about the problems facing the multi-disciplinary North West Neuromuscular Network - founded and chaired by Dr Stefan Spinty, Consultant Paediatric Neurologist and lead neuromuscular clinician at Alder Hey Children’s Hospital, Liverpool. Dr Spinty is currently managing this vital network single-handedly without any funding. We believe that the Network should at least be supported by a Network Coordinator. Greater support at transition from paediatric to adult services is also needed, given the evidence of services being removed or greatly reduced when people leave paediatric services. Existing transition services are extremely vulnerable and we were concerned to learn from clinicians that none of the transitional services in the region are funded nor appropriately staffed. Having met with commissioners from the North West Specialised Commissioning Group to discuss these concerns, local clinicians and representatives from the Muscular Dystrophy Campaign were disappointed to be told that there are competing priorities in the region, and that PCT budgets were under strain. We urge the North West SCG and the local PCTs to undertake a service review to address the weaknesses highlighted by clinicians, patients and the Muscular Dystrophy Campaign.”

The NHS North West specialised commissioning group has taken significant steps forward since those findings, and I will outline them shortly.

The North West Muscle Group raises awareness of neuromuscular conditions and provides a forum for people living with the condition to share experiences and advice about access to local and regional services. Since its launch in June 2009, the group has been actively campaigning to improve access to neuromuscular services in the region, engaging with MPs and with the NHS North West specialised commissioning group. Pressure from the North West Muscle Group, alongside the Muscular Dystrophy Campaign and the all-party group, was instrumental in ensuring that the NHS North West specialised commissioning group conducted a thorough review of neuromuscular services.

Joanne Ashton, a member of the North West Muscle Group, commented:

“I’m glad I joined the Muscle Group. It means I’ve got all this information early on and I won’t come up against a brick wall later - I feel I’ve been pre-armed. It’s nice to know I’m not on my own and it’s good to meet other people at different stages. Every day I imagine how bad things could get, but at the Muscle Group I met young lads with Duchenne muscular dystrophy who are in wheelchairs and they’re fantastic, they’re doing so well. Everything had a real positive spin on it too, and I realised that it’s not all doom and gloom.”

The campaign in the north-west was further spurred on by a comment made by Mike Farrar, NHS North West’s chief executive, to Lord Walton of Detchant at an event in Parliament in November 2009. Having referred to the review of neuromuscular services in the south-west, which Sir Ian Carruthers, NHS South West’s chief executive pushed through, Mike Farrar commented:

“Anything Sir Ian Carruthers can do, we can do better”.

As a result of lobbying by the Muscular Dystrophy Campaign, a review of services was set up in the NHS South West specialised commissioning group in February 2008. In February 2009, local primary care trusts approved a new £1 million neuromuscular strategy to reduce the £6.9 million spent in the region on unplanned emergency admissions to hospital for people with neuromuscular conditions.

I am fully aware, as are several hon. Friends, of the excellent work by the NeuroMuscular Centre in Winsford, Cheshire, which is in the constituency of my hon. Friend the Member for Eddisbury (Mr O'Brien). That centre provides ongoing specialist physiotherapy, which reduces the number of falls among people with neuromuscular conditions, and it also offers social enterprise opportunities. However, although the physiotherapy provision is regarded as excellent by those who go to the centre, difficulties are encountered with PCTs and funding, as reported in the Muscular Dystrophy Campaign’s patient survey 2010. Mr A from Cheshire has Charcot-Marie-Tooth disease and travels to the centre for specialist physiotherapy and hydrotherapy, but his local PCT is unwilling to pay, despite not offering him any alternative physiotherapy or hydrotherapy provision. Following concerted pressure by the Muscular Dystrophy Campaign, the North West Muscle Group and the all-party group, Jon Develing, chief officer of the NHS North West specialised commissioning team, made a personal commitment to the all-party group in January to recommend that the NHS North West specialised commissioning group undertake a review of neuromuscular services.

The review was set up by the commissioning group in May 2010, and the steering group set up an effective model for the NHS working with the Muscular Dystrophy Campaign, patients and expert clinicians from the region. To further involve people living with neuromuscular conditions, a stakeholder day was held in September 2010, which represented a vital opportunity for people to have their say about the services that are crucial for an acceptable standard of specialist neuromuscular care in the region. That led to a gap analysis and a report with recommendations for service improvements— the first time ever that neuromuscular services have been looked at in this way, across the whole region.

The recommendations are currently being put to local primary care trusts to approve new investment for a neuromuscular strategy. The proposed minimal required investment to reduce the £13.6 million spent on unplanned emergency admissions to hospital for neuromuscular conditions and to sustain neuromuscular services across the north-west includes 2.5 new fully NHS-funded care advisers, 2.5 specialist consultants, two to three specialist physiotherapists and one specialist neuromuscular nurse.

Will the Minister agree to write to the specialised commissioning group and to PCTs, endorsing the recommendations as necessary steps to save money and reduce unplanned emergency admissions? Will he ensure that a named individual in the NHS in the north-west will take the work forward once the specialised commissioning groups disappear? The neuromuscular network approach is hugely important to ensure the co-ordination of neuromuscular services in specialist multidisciplinary teams, as demonstrated in the south-west of England and by the Scottish Muscle Network, and to ensure links to the primary and secondary care that plays a crucial part in the management of neuromuscular conditions.

Dr Stefan Spinty, consultant paediatric neurologist at Alder Hey children’s hospital, who played a leading role in the north-west neuromuscular service review, said:

“In order to improve patient outcomes and help to reduce unnecessary and costly hospital admissions, it is important that the recommendations from the North West Specialised Commissioning Group report, which is due to be published soon, are implemented. All neuromuscular clinicians who have been involved in the North West neuromuscular service review are committed to support the implementation process to further improve and secure service provision for individuals affected by neuromuscular conditions in the future.”

Christine Ogden, a campaigner and fundraiser from Bolton, whose grandson has Duchenne muscular dystrophy, said:

“It is vital, that essential increase in care, support and advice for families outlined in the North West Specialised Commissioning Group’s report recommendations, which will make a real difference for families living with muscle disease. It is also so important that information for health professionals about neuromuscular conditions is significantly developed.”

Beryl Swords from Liverpool, whose son John has FSH muscular dystrophy, has commented on the provision of physiotherapy for adults with neuromuscular conditions:

“I feel strongly that physiotherapy for adults with muscular dystrophy is totally inadequate. If improvements were made to North West neuromuscular services, then perhaps this area of care could be more freely available, keeping people with the condition mobile for longer.”

The urgency of improving neuromuscular services in the north-west is encapsulated in the following comments by Nicci Geraghty, a north-west campaigner and fundraiser:

“I have two nephews with Duchenne muscular dystrophy. This is not only a cruel condition for my nephews to suffer from, but also very harrowing at times for us as a family to watch each stage of progression knowing that the postcode lottery already exists throughout the country. This has a huge impact on survival rates and I don’t wish to see my nephews robbed of any chance they have to lead the best quality of life possible.”

The evidence provided makes a compelling case for the urgent necessity of developing and improving neuromuscular services in the north-west in order to save money. Will the Minister write to NICE stressing the importance of a NICE quality standard for Duchenne muscular dystrophy, as well as one on home ventilation and respiratory support? Will he attend the next meeting of the all-party group on muscular dystrophy on Wednesday 9 March to update the group on progress, and will he agree to meet clinicians who have been developing a neuromuscular curriculum with the Association of British Neurologists? Thank you for calling me, Mr Davies.

Oral Answers to Questions

Lord Evans of Rainow Excerpts

Tuesday 25th January 2011 Commons Chamber

[Charlie Elphicke (Dover) (Con)]

2. What steps he plans to take to increase cancer survival rates.

[Graham Evans (Weaver Vale) (Con)]

10. What assessment he has made of the effects on survival rates of his Department’s cancer strategy.

--- Later in debate ---

[Paul Burstow]

Just last year the national clinical director published a report on the extent and causes of international variations in drug usage, which revealed that the UK tends to lag behind other countries in its use of newer cancer drugs. That is one reason why we have introduced the interim cancer drugs fund of £50 million in this current year and will introduce the full fund of £200 million from this April. That will help my hon. Friend’s constituent.

[Graham Evans]

What steps is my hon. Friend taking to ensure that all GP consortia will have access to the expertise they need to commission cancer services effectively?

[Paul Burstow]

The national cancer director will work with pathfinder GP consortia on commissioning cancer services, and that work will be fed into a cancer commissioning support pack that will be developed to support GP commissioners in discharging their functions effectively. Cancer networks will also be well placed to support GP consortia in that activity.

Oral Answers to Questions

Lord Evans of Rainow Excerpts

Tuesday 2nd November 2010 Commons Chamber

[Mr Lansley]

May I welcome the hon. Gentleman to his new responsibilities?

We are doing this because it is absolutely essential for the NHS to use resources better to deliver improving outcomes for patients. A combination of the ability for general practice-led consortiums to combine the management of care for patients with the management of resources is instrumental to achieving that. It will deliver substantial reductions in management costs. We will achieve a £1.9 billion-a-year reduction in management costs by 2015.

[Graham Evans (Weaver Vale) (Con)]

9. What progress he has made on increasing the provision of specialist neuromuscular care in (a) the north-west and (b) England.

[The Parliamentary Under-Secretary of State for Health (Anne Milton)]

I thank my hon. Friend for that question. I pay tribute to the Muscular Dystrophy Campaign and a number of other organisations that have been so successful in raising these issues. A review of specialist neuromuscular services in the north-west was completed in September 2010. I understand that the focus of the review was the particular pressure areas of service provision highlighted by Muscular Dystrophy Campaign reports and corroborated locally by key stakeholders.

[Graham Evans]

I thank my hon. Friend for that answer. Muscular dystrophy is a particularly terrible muscle-wasting disease that afflicts many constituents of mine. Will the Minister agree to meet me and the NHS north-west specialised commissioning group to discuss the action required to reduce the £13.6 million spent on unplanned emergency admissions for neuromuscular conditions in the region?

[Anne Milton]

I know that I speak for all the ministerial team in saying that we are always very happy to meet groups to go through some of the situations. I would also urge continuing to campaign locally. If services are not provided adequately and properly, the unnecessary admissions due to that poor provision are considerable, as are the costs associated with them.