NHS Continuing Care

Rosie Cooper Excerpts

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.

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[The Parliamentary Under-Secretary of State for Health (Jackie Doyle-Price)]

I thank the right hon. Member for North Norfolk (Norman Lamb) for securing the debate and giving the House a chance to discuss NHS continuing healthcare. He has achieved a pretty good attendance here tonight, given that it is a Monday on a one-line Whip, which is symptomatic of the interest in the subject. I find that heartening, and he spoke with great sincerity and passion about his concerns. We are grateful to him for that; I know that he thinks very deeply about this subject.

This subject provides challenges, as the right hon. Gentleman pointed out, and he made some valid points about the problems facing the continuing healthcare system. In particular, the Government are aware of issues around variation and the complexity in the system. He highlighted some important examples of that. He also highlighted discrepancies, which he was right to raise. We all recognise the frustration that many members of the public sometimes have with the current system. For those with complex needs, and their families, the process can be very difficult to understand, which can lead to stress and confusion at an already difficult time in their lives. He will know that variation in the system has been a concern for some time. First, I will set out what the Government are doing to address those things and to try to achieve consistency, before I turn to some of the other concerns.

Decisions about NHS continuing healthcare are important and have a big impact on people’s lives, which is why it is right that there is a careful and considered decision-making process in place, which must take into account each individual’s care and support needs. My officials are currently working on updating the NHS continuing healthcare national framework, which is the national guidance that underpins the system. That will help health and social care professionals across the country to apply the framework more consistently and effectively, and improve the experience for individuals. We are working with NHS England, local authorities and key stakeholder organisations such as the Continuing Healthcare Alliance and other charities on this update, to ensure that we draw on the full range of experience and knowledge. Members of the public with experience of NHS continuing healthcare have also made a valuable contribution to this process.

I would like to reassure the House that this update to the national framework will not affect eligibility for NHS continuing healthcare, or the extent of the service provided by the NHS. Instead, the update aims to clarify the process and improve outcomes for patients, carers and their families, and those working in the health and care system. The Department will publish this update to the national framework in the new year. However, we understand that these changes alone are not enough to deliver all the necessary improvements, particularly on issues such as the variation in eligibility decisions that the right hon. Gentleman highlighted. That is why we are working closely to support NHS England with its NHS continuing healthcare improvement programme.

The aim of the improvement programme is to consider how NHS continuing healthcare services can be improved by addressing key areas of concern—namely, variation in patient and carer experiences, and ensuring that assessments occur in the right place and at right time. That issue has also been raised in the debate tonight. The programme will set national standards of practice and strengthen links between other NHS England work programmes that promote the personalisation of care.

To some extent, there will always be some variation in NHS continuing healthcare eligibility rates, and that can be due to wide range of reasons, such as the age dispersion within a local population, variation in levels of health need between geographical areas and the availability of community services, including step-down beds, intermediate care, rehabilitation services and end-of-life services. However, NHS England analysis shows that variation in NHS continuing healthcare eligibility is reducing over time. Work to address variation has already seen improvements, with an approximate 7% reduction in the distribution of variation across standard NHS continuing healthcare eligibility decisions since 2013-14, but the National Audit Office report shows that we obviously have some way to go.

The NHS continuing healthcare assessment process has also been mentioned tonight, and NHS England has introduced a quality premium for 2017 to 2019 to incentivise clinical commissioning groups to carry out more than 80% of assessments within 28 days. Clinical commissioning groups with the highest number of delayed cases are required to establish improvement plans setting out key milestones and planned improvement measures.

The right hon. Gentleman mentioned the claim that budgets are effectively being capped, but I want to emphasise that the national framework for NHS continuing healthcare makes it clear that the starting point for agreeing an NHS continuing healthcare package and the setting where NHS continuing healthcare services are to be provided should be based on the individual’s preferences. However, in some situations, a model of support preferred by the individual will be more expensive than other options and clinical commissioning groups can take comparative costs and value for money into account when determining the model of support to be provided. None the less, the principle that healthcare is free at the point of delivery should and does stand.

Right hon. and hon. Members also raised the breach of human rights and the challenges made to some CCGs. We are interested in the thinking behind that and will explore such issues further.

The right hon. Gentleman discussed the wide variation in the conversion rate of assessments. In his constituency, the conversion rate of 24% appears low when compared with the national average of 31%, but that has to be set against the fact that standard NHS continuing healthcare is currently available for 68.13 per 50,000 people compared with a national average of 43.04 per 50,000 people. I make that point because meaningful comparisons are difficult, but he is right to highlight such issues so that we can satisfy ourselves that we are delivering the commitments in the Care Act 2014, which states that no one should be deprived of care if it is based on their need.

The right hon. Gentleman suggested that some clinical opinions were being questioned, so I want to make the Government’s position clear. CCGs must have regard to the guidance, which states:

“Financial issues should not be considered as part of the decision on an individual’s eligibility for NHS continuing healthcare, and it is important that the process of considering and deciding eligibility does not result in any delay to treatment or to appropriate care being put in place.”

All hon. Members should ensure that that is being adhered to and make appropriate challenges where we believe it is not. The Government and NHS England are looking at strengthening our assurance processes to ensure that those standards are met and that CCGs comply with the national framework. Since April this year, that now includes extended quarterly reporting of NHS continuing healthcare data metrics and robust improvement monitoring, including on eligibility and assessment conversion rates.

I know that the right hon. Gentleman wrote to NHS England about the performance of North Norfolk CCG. I am sure that he is waiting for the outcome of the review with some interest, and I will not be surprised if I hear from him again on this. I am grateful for his interest in this subject and for the spirit in which he made his comments.

As we are all living longer, the challenges to the health service and the care system are becoming ever greater, and he is absolutely right to highlight the need for cross-party co-operation as we address these issues and set the long-term future of care and health on a more sustainable footing.

[Rosie Cooper]

I understand how the system should be and how the Minister wishes it to be, but our comments tonight have been about how the system is. We can make information available to the Minister about instances that show the system is not working as she describes. I have a constituent with a severe spinal injury who was getting continuing healthcare. There was a tick-box exercise that she thought was just a review, but, nine or 12 months later, the care has been taken away.

[Jackie Doyle-Price]

I would be happy to look into that case. I have received advice that continuing healthcare packages for lifestyle or physical conditions are often altered depending on progress. The guidance under the framework is quite clear on what is applicable, who is eligible and what conditions are not eligible. Where there is a question on whether obligations are being met under the law—the obligations are enshrined in the Care Act and under the NHS principle that all treatment should be free at the point of delivery—the hon. Lady is right to make that challenge. I am more than happy to investigate that case.

I am running out of time, and I am sure this will not be the last time we address this issue, so I conclude by thanking the right hon. Member for North Norfolk for securing the debate and thanking all hon. Members who have shown an interest. This debate bodes well for our discussions over the coming months on these vital subjects.

It is vital that we continue to work closely with NHS England, local authorities and key stakeholders to improve the system for everyone. There is a lot of work to do and, although the direction of travel in some respects is positive, as with all these things, we are all less patient than we would like to be.

I hope the right hon. Gentleman can appreciate that the Government and NHS England are very much aware of the challenges in this area, both in his constituency and in the constituencies of other hon. Members. I am confident that the steps we are all taking to improve the system are the right ones and will deliver an improved experience for patients, families and carers based on a more consistent application of eligibility and variation.

Question put and agreed to.

NHS Pay

Rosie Cooper Excerpts

Wednesday 13th September 2017 Commons Chamber

[Jonathan Ashworth]

My hon. Friend is right to raise that point. I shall go on to explain that the pay cap is at the heart of the recruitment and retention crisis that is now facing the national health service.

[Rosie Cooper (West Lancashire) (Lab)]

Does my hon. Friend share the shock of GPs and NHS staff when they learned that, while frontline staff were limited to a 1% pay rise, the governing body of the Liverpool clinical commissioning group gave themselves rises of between 15% and 81%? None of the regulators noticed this, including NHS England and NHS Improvement, and it all took place under the nose of the Government. This shows that there is one rule for the bosses and another for the workers.

[Jonathan Ashworth]

My hon. Friend is absolutely right. She has been determined in her pursuit of this issue and I know that that will continue.

Incontinence

Rosie Cooper Excerpts

Tuesday 5th September 2017 Commons Chamber

[Mrs Moon]

I thank my hon. Friend for that intervention. In particular, we should look at the need for teachers to understand the issue of incontinence. They need to understand that a child who constantly puts their hand up and says that they need to go to the toilet is not trying to get out of the lesson, and that it is perhaps an indication of a deep-seated problem that needs to be tackled. There is certainly a need to educate and to build awareness of continence problems in schools. This relates to the little ones coming into the reception class—some of whom, increasingly and shockingly, have not been potty-trained and have not learned to control their bowels and bladder—and the problem continues throughout the school. Schools need to step in and ensure that parents and children have access to the help and advice that they need.

People should have the confidence to talk about the problem to GPs and to seek an early diagnosis and intervention. People should not have to assume that it is something they have to live with. It is estimated that people manage the problem themselves for an average of five years before seeking help. We also need to highlight the detrimental impact that incontinence can have on an individual, and the fact that existing policy responses exacerbate the situation. This is a quality-of-life issue. It affects sleep and mental wellbeing, and it can cause isolation. For a child, it can have a long-term impact on their self-esteem and on family relationships, and it often makes them vulnerable to bullying.

Access to toilets can become a determining factor in every journey and activity away from the home. The condition can also lead to more complex health problems, which are inevitably more expensive to treat, and some people even choose residential care so that they can have management of their problem. One specialist in the field summed the situation up by saying:

“The reality is that bladder and bowel continence needs can affect anyone at any age. It can reduce a person’s enjoyment of life, ability to live an independent life, reduce education and work opportunities and lead to further medical complications.”

Patient surveys have highlighted the limitations imposed on people’s lives by their conditions. For sufferers who responded to a survey, those restrictions and sleep deprivation were the worst aspects, with 93% saying that it had affected their mood, 63% saying that it had affected their ability to work, and 39% saying that it had forced them to take time off work. Frustratingly, there are solutions for many, but people all too frequently struggle to cope on their own, using incontinence products available in local chemists rather than seeking the help that could be available from the NHS.

[Rosie Cooper (West Lancashire) (Lab)]

It is really important to note that people who rely on getting pads and looking after themselves are not getting the best service, and doctors and nurses are sadly not receiving training in this most important area. Shockingly, the pre-registration nurse curriculum does not include training for bladder or bowel incontinence, so it is all too easy not to address the real problem. We need that experience to help people; we should not just pad them up. People can be helped with exercise, for example, and there are many interventions that could help instead of them being told simply, “Go and buy a pad.”

[Mrs Moon]

I commend my hon. Friend’s work for the all-party parliamentary group on continence care, which does invaluable work in this area.

I am going to jump to another section of my speech. It is shocking how many people go into hospital with no continence problems but may be incontinent or doubly incontinent and have major problems by the time they leave. It is far too easy for nurses and doctors to see the use of pads as the only solution. At some point, I hope the Minister will look at how we can gather figures from hospitals on how many patients enter with continence problems and how many leave with continence problems to get some idea of how great the problem is.

I chair the all-party parliamentary group on Parkinson’s, and the Minister will be aware that Parkinson’s UK has campaigned for many years due to the problems that people with Parkinson’s have when they go into hospital and their carefully timed medication regime is changed to fit in with drugs rounds on the ward. A perfectly mobile and continent person can become immobile and incontinent due to NHS failure. That cannot be allowed to carry on. It is shameful that we are facing such problems in 2017.

Diagnoses are not made in a huge number of cases. Healthcare professionals do not provide consistent assessments, diagnosis and follow-through according to standard practice. Even basic things, such as an assessments of where the toilet is in relation to where someone sleeps, are not carried out by social workers. I cannot begin to tell the House how many times people are admitted to hospital as the result of a fall at night caused by them trying to negotiate the stairs to go up or down to a toilet that is on a different level from where they sleep. It is shocking that people face having to wear an incontinence pad because they cannot use the stairs or because there is a risk of them falling at night when accessing the toilet. We simply must get this sorted out.

Incontinence can cause additional problems. Urinary tract infections, pressure sores, anxiety, depression and falls cost the NHS a great deal of money, and we could save money by making relatively simple changes. I have not been able to find any comprehensive analysis of the cost to the NHS and other services that would demonstrate potential savings from early interventions. As far as I am aware, such an assessment has not been carried out. A series of parliamentary questions tabled last year revealed that data are not held by the Department of Health on the number of people admitted to hospital for catheter-associated urinary tract infections, for non-catheter-associated urinary tract infections or with urinary incontinence generally. If it existed, such information would help to clarify the extent of the problem. An estimate was offered in 2014-15, with NHS trusts reporting an annual cost of £27.6 million, which is almost certainly an underestimate.

Too many individuals are bearing the brunt of managing their condition. Buying a regular supply of pads costs anywhere between 10p a pad, for a child, and 60p a pad, depending on the type of pad required.

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[Steve Brine]

Clearly, it is not my place to promise work tasks for Education Ministers, let alone other Health Ministers, but they will have heard what the hon. Gentleman said. I have a feeling that he will be following this matter up, no doubt through the all-party group. The chair of that group, the hon. Member for West Lancashire (Rosie Cooper), is sitting but two rows in front of him.

As well as outlining an individual’s pathway from assessment to treatment and recovery when possible, the guidance advocates integration across the different areas. Strengthening the workforce’s knowledge is absolutely key. In England, continence care and the importance of this issue to the comfort of patients is already an important part of the basic training offered to a wide range of clinicians and care workers and is part of the Nursing and Midwifery Council’s training curriculum.

The commissioning guidance builds on that by setting out the minimum standards required along with the specific roles and responsibilities for every member of a patient’s continence team including the individuals themselves, their family—very important—and carers. It is important to acknowledge that, following assessment and with the right advice, self-management of a condition can improve outcomes considerably.

There will always be people, including some in care homes, who have a need for aids. A group of specialist nurses for adults and another group for children are currently preparing some consensus guidelines on commissioning continence products, which in due course the Excellence in Continence Care board will consider for endorsement as a supplement to the framework. Of course we need to make sure that commissioners are following the framework, and NHS England is taking several approaches to tackle this. Let me touch on a few of them.

[Rosie Cooper]

The Minister’s comments are very welcome, but what pressure can he really apply to get clinical commissioning groups to implement NHSE’s guidance and to get the GMC, the Nursing and Midwifery Council and medical schools to include training in continence? If we can get that right, those facilities will be there when people say that they have the problem. Then we will get the clinical intervention, not just the costly pads in response.

[Steve Brine]

I thank the hon. Lady for her intervention. I will take that away with me, and I will come on to the point about the CCGs.

I was just about to outline the approaches that NHS England wants to take to ensure that commissioners are following the framework. They include arranging for CCGs to have access to teams of expert clinicians, commissioners from areas that have adopted the guidelines and are following best practice, and people with lived experience to review their existing service against the best practice and make appropriate improvements. NHS England is also exploring the potential for a mandatory data set to provide transparency about the continence services being commissioned and encouraging CCGs to develop integrated commissioning arrangements to improve co-ordination, experience and use of resources. That is all very positive.

In addition, the National Institute for Health and Care Excellence—or should I say NICE as I am now getting to grips with all the acronyms—has produced a range of guidance for clinicians to support them in the diagnosis, treatment, care and support of people with continence problems, including the 2015 quality standards for urinary tract infection in adults, which sets out how treatment must be holistic.

I understand that the Under-Secretary of State for Health, my hon. Friend the Member for Thurrock (Jackie Doyle-Price), recently replied to the hon. Member for Bridgend on the issue of paediatric continence data and the risk of losing the National Child and Maternal Health Intelligence Network, which provides a valuable data resource. Let me take the opportunity to reassure the hon. Lady that the ChiMat legacy website can still be accessed. Paediatric continence is a very important issue. I understand that Public Health England is grateful to the Paediatric Continence Forum for its productive collaboration over the years and that it wishes this relationship to continue. It has agreed that if PHE’s infrastructure remains the best place within the health system to enable these reports and to make the data available at a local level, it will make every effort to recreate the paediatric continence needs assessments during its 2018-19 business planning process. I am the Minister responsible for Public Health England. I see its leaders regularly and I will raise it with them next time I see them.

Oral Answers to Questions

Rosie Cooper Excerpts

Tuesday 4th July 2017 Commons Chamber

[Mr Hunt]

I am more than happy to meet my hon. Friend. The principle behind the capped expenditure process is that we should have fairness between patients in different parts of the country. We should not see patients in one part of the country disadvantaged because the NHS has overspent in their neighbouring area, but the way in which we implement the process must be sensitive and fair. We must ensure that we get it right.

[Rosie Cooper (West Lancashire) (Lab)]

What advice would the Secretary of State give to my constituents who receive their urgent care from Virgin Care, and are told that wounds should be dressed only once and that, in the event that they need to re-attend, they should purchase further dressings from the local chemist? Free at the point of delivery?