NHS Continuing Care

Debate between Rosie Cooper and Norman Lamb

Monday 27th November 2017 Commons Chamber

[Norman Lamb]

I will come on to that point in a moment. We are seeing more and more cases of couples being forcibly separated, which is really shocking and a denial of their human rights, so I agree with the hon. Gentleman.

At the end of March 2017, 57,000 patients were eligible for continuing healthcare in England, which was down 1.6% on the previous quarter and 2.7% on the previous year. What possible explanation for that can there be? Demand is rising significantly every year across the country, yet the number of people entitled is going down. That must be due to decision makers imposing tougher eligibility criteria.

[Rosie Cooper (West Lancashire) (Lab)]

Is the right hon. Gentleman aware of the trend in my constituency of people who are already in receipt of continuing care being reviewed and deemed no longer eligible? As a result, the cost of their care is pushed on to local government, instead of continuing to be met from within the health service?

[Norman Lamb]

I am aware of that. Often there is no change in such people’s condition, but sometimes their condition deteriorates. Sometimes the cost is pushed on to the local authority, but sometimes it is pushed on to the family, which is another very serious concern.

There are also a great many complaints about the process that is used. There are complaints about evidence being ignored, which can result in a judgment that someone is ineligible for NHS continuing care, and about professionals lacking an understanding of the condition that they are supposed to be considering. A survey conducted by the Continuing Healthcare Alliance found that 66% of people felt that professionals knew little about the condition that was under consideration. More seriously, there were allegations that medical opinions were being ignored. The BBC heard from three health workers who revealed, effectively as whistleblowers, that medical opinions were actively ignored as part of the process.

Obstructive Sleep Apnoea

Debate between Rosie Cooper and Norman Lamb

Tuesday 2nd September 2014 Westminster Hall

[Norman Lamb]

In accordance with the request of the hon. Member for Sheffield, Heeley (Meg Munn), I will write to the Health and Safety Executive. She made a good point, and I am happy to raise it directly with the HSE. Those are serious issues, and they deserve to be taken seriously.

The case studies provided by the hon. Member for Bolton West clearly demonstrated the benefit of accessing treatment, and the impact that treatment can have on someone’s life. I agree with the hon. Member for somewhere near Liverpool—

[Rosie Cooper]

West Lancashire.

[Norman Lamb]

I apologise; I agree with the hon. Member for West Lancashire (Rosie Cooper) that that is a no-brainer. As other hon. Members have said, we must raise awareness and understanding not only among the general public but among clinicians and general practitioners, because a problem with diagnosis may arise because a GP does not recognise the need for a referral. As the hon. Member for Strangford (Jim Shannon)—I think I have got his constituency right, at least—has said, we must work with the devolved Administrations and ensure that we raise awareness of the condition across the United Kingdom.

As the case studies demonstrate, OSA can have a huge impact on the quality of life of those who suffer from the condition and their families, which the example of Steve demonstrates so graphically. OSA can contribute to other long-term health conditions, such as high blood pressure, stroke, diabetes and, critically, mental health issues. The hon. Member for Bolton West made a point about Steve contemplating suicide, and we often forget about the close connection between many long-term conditions and the mental health issues that can go with them. People suffer depression because of an inability to escape their condition.

As we have heard, OSA can also lead to serious, even fatal, accidents. The statistic that there may be 40,000 preventable road traffic accidents is extraordinary. The issue is driver fatigue. Sleep apnoea sufferers are thought to be seven times more likely to cause crashes than drivers without the condition. The challenges posed by OSA should not be underestimated. In the UK it is thought that some 4% of middle-aged men and 2% of middle-aged women suffer from OSA, which in many cases requires lifetime treatment of the sort described by the hon. Lady. A further complication is that, as she describes, OSA is often left undiagnosed because people with the condition usually have no memory of some of the key symptoms, such as interrupted breathing during sleep, so they may be completely unaware that they have a problem unless a partner happens to raise it with them.

The NHS outcomes framework for 2014-15 sets out the Department’s priority areas for the NHS and includes reducing deaths from respiratory disease as a key indicator. Additionally, the mandate sets out the requirement for NHS England to improve outcomes in a range of areas, including preventing premature deaths from the biggest killers, which include respiratory illnesses, and supporting people with long-term physical conditions such as sleep apnoea. Incidentally, it will be interesting to see the economic impacts that the report will set out. I am happy to take that up with the national clinical director, too.

Our “Living Well for Longer” report, which was launched in April 2014, sets out what the health and care system will do to achieve the Government’s objective to be among the best in Europe at reducing levels of premature mortality. The report brings together in one place the national actions taken by the Department and the wider Government, NHS England and Public Health England on prevention, early diagnosis and treatment, focusing on the five big killers, including lung diseases, and showing how they will support local leadership and interventions.

Local clinical commissioning groups are responsible for assessing the needs of their local populations and for commissioning services to meet those needs. For patients with OSA, NHS England expects CCGs to take the NICE guidelines into account when deciding what services should be made available. NICE has recommended continuous positive airway pressure as a treatment option for adults with moderate or severe symptomatic OSA or hypopnoea syndrome, where certain clinical criteria are met. NHS commissioners are legally required by regulations to fund that treatment, where clinicians wish to use it.

Continuous positive airway pressure is currently the only technology recommended for OSA in NICE technology appraisal guidance. The hon. Lady mentioned a referral to NICE for a quality standard, and I am happy to write to NICE. She will understand that NICE is independent, and it is important to respect that independence, but I am happy to ask NICE where that issue is in the work stream of quality standards that are waiting to be addressed. That work will be completed by 2017, which is the long-stop date. I will check, and I am happy to write to her to confirm the position.

Although it is not always possible to prevent OSA, making certain lifestyle changes may reduce a person’s risk of developing it. Those changes include losing weight, limiting alcohol consumption and stopping smoking. The Government are acutely aware of the damage being done to the population’s health through smoking and harmful drinking, which is why we have set out clear ambitions for driving down the prevalence of smoking and reducing the incidence of alcohol-related disease in our tobacco control plan and our alcohol strategy respectively.

We have ensured that NHS health check, a key programme to address systematically the top seven causes of preventable mortality, includes identifying and helping people to take action to quit smoking, maintain a healthy body weight and reduce alcohol consumption. All those issues, of course, have an impact on a range of conditions, including vascular dementia and heart disease, but they are also relevant to sleep apnoea, and we ought to be doing more to address the issues that could prevent the condition.

Through the responsibility deal, we are actively working with business to take voluntary action on calorie reduction and food labelling to help people make healthier eating choices. That is already delivering change and making a real difference. The Change4life social marketing campaign is encouraging individuals to make simple changes, such as reducing their calorie consumption and being more active. One of the key challenges in tackling OSA, as several hon. Members have said, is raising awareness of the condition. It can be difficult for sufferers to detect OSA themselves, and it often goes undiagnosed as a result. In fact, it is estimated that in this country up to 3% of adults across all age groups have undiagnosed OSA, which is an extraordinary number. There are then the associated accidents.

Surveys carried out by the British Lung Foundation in 2011 and 2014 to measure awareness of OSA show that awareness of the condition has risen significantly, which we should applaud. Awareness has especially risen among men, who are most at risk, and in areas with a high risk of OSA. I pay tribute to the British Lung Foundation, which has worked collaboratively with the hon. Member for Bolton West, and the important work of its obstructive sleep apnoea project that aims to improve diagnosis and raise awareness of the condition. The project’s successes include the largest survey of OSA sufferers ever undertaken, a UK-wide mapping tool of sleep services and prevalence of known OSA risk factors and a media campaign that reached at least 48 million people.

It was a privilege for me to attend the recent opening of the Breathe Easy North Norfolk group. Breathe Easy groups have the potential to be incredibly powerful, and they are run by their members with help and support from the British Lung Foundation. Breathe Easy groups provide support and information to people living with a lung condition, as well as those who look after them.

Those are all examples of highly valuable initiatives led by the British Lung Foundation that have a huge impact on the lives of a great number of OSA sufferers in the UK. The effects of sleep apnoea are potentially devastating, and the condition affects thousands of people in this country, many of whom are not aware of the problem even when they are feeling its effects. It is vital that the NHS continues to work hard not only to reduce the number of premature deaths from all respiratory illnesses, including OSA, but to support people with long-term conditions better, regardless of where they live. I assure the hon. Lady that the Government will continue to work hard to improve outcomes for all those in society who have, or are at risk of, a long-term condition such as sleep apnoea.

I reiterate the point made by other hon. Members that the analysis of the economic case demonstrates that much better preventive work ultimately saves money, as well as having a massive impact on individual lives. I strongly feel that we need a shift of emphasis to focus much more on prevention.

Oral Answers to Questions

Debate between Rosie Cooper and Norman Lamb

Tuesday 26th November 2013 Commons Chamber

[Rosie Cooper (West Lancashire) (Lab)]

5. What recent assessment he has made of ambulance handover times at accident and emergency departments.

[The Minister of State, Department of Health (Norman Lamb)]

Patient handover is a key part of delivering good emergency care. Systems are in place to ensure efficient handover, but we recognise that it sometimes takes longer than the recommended 15 minutes, particularly during peaks of demand. We are taking the issue of handover delay seriously, which is why we have introduced financial sanctions for unacceptable delay.

[Rosie Cooper]

Southport and Ormskirk hospital in my constituency has one of the longest handover times in the north-west, with ambulances queuing outside the hospital and patients lying on stretchers for hours. How does that offer the patient-centred care and dignity that the Government keep promising but failing to deliver? What can the Minister do to make it better for my constituents?

[Norman Lamb]

That sort of experience is not acceptable and has to be addressed, and I am sure the hon. Lady will welcome the encouraging news that the sanctions in the national contracts that clinical commissioning groups enter into with hospitals have resulted in a 38% reduction in delays, comparing the first two weeks of last November with the first two weeks of this November, which is the first period during which we measure winter pressures on handovers. That sign of a significant increase is to be welcomed.

Liverpool Care Pathway

Debate between Rosie Cooper and Norman Lamb

Tuesday 8th January 2013 Westminster Hall

[The Minister of State, Department of Health (Norman Lamb)]

I do not have a Parliamentary Private Secretary sitting behind me, and I am most grateful therefore to you, Mr Weir, for your assistance with some Members’ constituencies.

I congratulate the hon. Member for Montgomeryshire (Glyn Davies) on securing the debate, and on the sober, serious and rational tone he deployed in his contribution. The whole debate, in fact, has been exemplary in that regard. I suspect that all of us in this room are after the same thing; it is how we secure it that matters so much. I have just over 11 minutes, which is not really enough to do justice to every contribution, so as soon as I possibly can, I will write to all the Members who have taken part, to update them.

I take the Liverpool care pathway extremely seriously. It has been much discussed recently: many hon. Members and members of the public have written to the Department of Health expressing their concerns, and there have been numerous parliamentary questions, too, all of which stems from a lot of media interest over the past few months. Several stories have appeared discussing the ways in which the LCP is used and what it is for. In particular, there have been a number of reports in the media alleging that patients are being placed on the LCP secretly, with no consultation with them or their relatives. It has been suggested that the LCP routinely involves medical staff withdrawing treatment, including food and fluids, from patients. Perhaps most seriously, the LCP has been accused of being a way to kill patients to save the NHS money. There have been suggestions that the Department of Health bribes hospitals with extra money for every patient placed on the pathway.

Those accusations paint a misleading picture of the purpose of the Liverpool care pathway, yet I take seriously the concerns raised by the families of patients who have experienced extremely poor end-of-life care. I am horrified by some of the stories that people have told me about the withdrawal of food and fluids from sick relatives in hospital and about the failure to inform loved ones that the patient has been placed on the pathway.

The hon. Member for Congleton (Fiona Bruce) spoke movingly of her experience, and I am pleased that she came to the round table that I held to discuss those concerns. As the hon. Member for Gainsborough (Mr Leigh) made clear, the concerns are legitimate and should be taken seriously, not dismissed because of exaggerated reporting. What happens on the front line and how we translate theory into practice are so important.

I agree with my hon. Friend the Member for Southport (John Pugh). I dislike the jargon: what on earth does “Liverpool care pathway” mean to patients and their families? We must use language that ordinary people understand, particularly at a most traumatic time for all involved. That is one thing we need to address.

One aspect of care that receives almost universal praise, as the hon. Members for Banbury (Sir Tony Baldry) and for Hackney South and Shoreditch (Meg Hillier) have made clear, is the hospice movement, which grew from Dame Cicely Saunders’s belief that, however ill, people matter at the end of their life and should never be abandoned. That is why the Marie Curie Palliative Care Institute Liverpool, led by Professor John Ellershaw, developed the Liverpool care pathway in the late 1990s. The pathway was designed to transfer the principles of hospice care—the shadow Minister, the hon. Member for Leicester West (Liz Kendall), made this point—so that terminally ill patients always get the best treatment, even if they do not receive specialist palliative care.

The Liverpool care pathway is not a treatment but a framework for managing treatments, which is important to understand. As the hon. Member for Montgomeryshire made clear, the LCP, when used correctly, is one way to ensure that the last hours or days of a patient’s life are as comfortable as possible. The guidance for using the LCP makes it clear that the aim is to support, not replace, clinical judgment. Sometimes there are questions about clinical judgment, but not about the pathway itself.

The Liverpool care pathway guidance sets out the following objectives and considerations for taking care of patients: determining whether any further medications and tests would be helpful; ensuring that the patient is as comfortable as possible—surely we all agree with that; helping the patient to take on food and drink for as long as possible, which means not denying them food and drink, as we sometimes hear; and taking care of the patient’s spiritual and religious needs, which is of acute importance to many people. The guidance reminds clinicians that unnecessary treatment or tests may cause harm rather than good.

The guidance states that regular review is acutely important. If their condition improves, the patient should be taken off the pathway. The 5% figure to which the hon. Member for Gainsborough referred is of concern and should be considered; it is essential that the medical team discusses the pathway with the patient, their family or their carers. Those people need to be fully involved in decisions about end-of-life care, even though those discussions may be very difficult. Obviously, those conversations need to happen as quickly as possible.

The Liverpool care pathway can work as intended only if each patient is fully consulted, unless that is not possible. Even then, the family must be fully involved. Through his interventions, the hon. Member for Stoke-on-Trent South (Robert Flello) made that point strongly. The opening section of the information sheet that comes with the pathway cites the absolute importance of discussion with the family. Staff must talk to the patient and their family as much as they need and want, to explain what is happening and why. That is non-negotiable. Any failure to do so is completely unacceptable.

The hon. Member for West Lancashire (Rosie Cooper) mentioned documentation, which is best practice and should always happen so that everyone can see what has been discussed. She also mentioned the constitution, and we are considering how we can give it greater traction. There is a sense that everyone agrees with the constitution, but what value is it? How can we make the constitution provide real power to patients in the NHS?

I agree with the shadow Minister’s concerns about translating across the whole system something that has been designed by experts. Such translation can be problematic and needs further attention.

[Rosie Cooper]

rose—

[Norman Lamb]

I am conscious that time is tight. I will write to the hon. Lady. If she wants to raise issues with me later, I will be happy to address them, but I need to respond to the debate.

From what people have said, it is clear that there are too many cases where patients have been put on the pathway without proper explanation, without the involvement of their family and sometimes without any notification, which is totally unacceptable. Yet again, we see how right Dame Cicely Saunders was when she said:

“How people die remains in the memory of those who live on”.

The impact is profound. My wife works for Cruse Bereavement Care, which does magnificent work helping people who have suffered bereavement. We have a duty to give such people the best possible experience as they lose a loved one.

On 26 November, I hosted a round-table meeting with patients, families and professionals—both supporters and critics of the pathway were represented—and at that meeting I announced that we will appoint an independent chair to consider how the LCP is used and experienced and to examine the accusations made in the press. We expect to announce the chair of that review very soon, and we expect that the chair will want to identify a small panel of independent experts from a range of backgrounds, including representatives from faith groups, which is important. I reassure hon. Members that the review will be independent.

The Liverpool care pathway is internationally recognised as good practice, and it is widely supported by organisations involved in end-of-life care. If people do not feel that they have received the best care or, worse, if patients cease to trust the pathway, that is a problem that needs to be addressed.

Training is fundamental, as the hon. Members for Hackney South and Shoreditch and for Congleton and the shadow Minister said, and it will be considered as part of the review. The review will systematically examine the experience of the Liverpool care pathway by patients, families and health professionals, and it will seek evidence to support or refute the accusations and to see where improvements might be needed. The review will hear directly from families. There will be a session dedicated to families so that they can tell the panel about their experiences.

The review will also consider the role of financial incentives in the use of the LCP. Like my hon. Friend the Member for Southport, the hon. Member for West Lancashire and others, I have concerns about the use of financial incentives. The review will report both to the Department of Health and to the NHS Commissioning Board by the summer.

Everyone wants their loved ones’ final hours to be as pain-free and dignified as possible. Used as intended, the Liverpool care pathway can help achieve that. The pathway prioritises comfort, dignity and appropriate care, but all that is undermined if the public distrust the pathway and if clinicians do not apply it properly. We do not dismiss people’s concerns, which I take extremely seriously. Instead, we have to ensure that care in the last few days and hours of life is always of the highest standard. Reinforcing the absolute importance of involving patients and their families in discussions on their care and treatment is essential.