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Stroke (Emotional and Psychological Consequences)
When I was in my early twenties, my father had a stroke. He was sent home from hospital, an extra rail was put on the stairs, he was given a walking stick and consigned to the care of my mother. He received very little help and support, and we did not know what to expect or how best to help him. I watched him struggle desperately hard to get better, but we did not know how best to support him.
My father had a second stroke and died. Nowadays, his chances of a physical recovery would be very much better. The previous Labour Government’s investment in stroke networks and specialist stroke units have improved the outcome for stroke patients hugely. More people are now admitted to a specialist stroke unit, more people who can benefit from clot-busting drugs get them, and two thirds of people get a brain scan within 24 hours. There is a lot more to do, but there is no doubt that great progress has been made. However, our investment and progress in the psychological and emotional support of stroke survivors has not kept pace with physical care, despite the fact that stroke is the biggest single cause of severe disability in adults.
One cannot prepare for a stroke, because it is a sudden and catastrophic event. If the part of the brain that deals with emotions is affected, many people find themselves thinking, feeling and behaving in an entirely different way. Many suffer feelings of anger and frustration because they can no longer work, care for their families or do even simple tasks. It is not surprising, therefore, that anxiety and depression often result. Families, too, can find themselves in a difficult position, sometimes in the worst cases grieving for the person they have lost while still taking care of that person.
The emotional and psychological effect of stroke was set out by the Stroke Association last year in its report, “Feeling Overwhelmed”. I am grateful to it for its research, and to the people who came to the parliamentary reception we held and were kind enough to share their experiences with me. The effects can be seen in all age groups, but are particularly severe in the 30 to 59 age group, where 76% of people who responded to the Stroke Association’s survey reported feeling severe anxiety and 69% suffered from depression. People find that they lose control of their emotions after a stroke, and it is estimated that two thirds suffer from post-traumatic stress. Despite that, we do not have the services in place to support them. In response to the survey, 42% felt abandoned when they left hospital, and two thirds said that their psychological care did not match the physical care that they received.
If we are going to change that, we have to see psychological and emotional support following a stroke as just as important as physical rehabilitation, and we have to accept that it can be needed for a long time. One person, for example, told the Stroke Association:
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“Many of the emotional issues arise, not at the time of the stroke when all you are doing is trying to get well again physically, but it’s months later when the reality hits you that you will never be the person you once were.”
It is not surprising that many people experience feelings of anger and lose confidence. Their greatest fear is often, understandably, of having another stroke. Some people suffer from aphasia, which is a common side-effect of stroke, yet they seldom get the care that they need. For example, one person said to the Stroke Association:
“Because I looked and still look physically well, I had hardly any help in dealing with inability to read, write and understand speech, lack of confidence or emotional problems.”
Helen Jones: These stories are not uncommon, and we have to begin to take them seriously. We would not accept such lack of care for us or any of our families, which means it is not suitable for anyone else either.
Carers, too, can suffer an awful lot of emotional distress. When the Stroke Association surveyed carers, it found that distress increased the longer someone had been caring: 48% of those who had been caring for three years or less suffered from stress; that figure rocketed to 69% among people who had been caring for seven years or more; 79% suffered from heightened anxiety and 56% from depression. Not tackling that is simply not good enough. These people take on a burden willingly that most of us could not cope with and save this country millions of pounds. We cannot, and should not, leave them unsupported.
I hope we all recognise the moral argument for doing these things, but there is also an economic argument. Research by the stroke improvement programme in England—sadly, no longer in existence—showed that an investment of £69,000 in psychological support using a properly led, multidisciplinary team could save £108,000 in NHS social care costs in two years. When the King’s Fund researched the link between long-term conditions and depression, it found that care costs for those who suffered from depression and a long-term condition were about 45% higher, typically, than for those who did not suffer from depression. Moreover, depression can increase the risk of another cardiovascular incident—in other words, of a stroke. A person is one and a half times more likely to have another stroke if they suffer from depression.
We should be taking seriously the need for psychological and emotional support after a stroke. We ought to be doing three things in particular. First, we need to see psychological support as an essential part of the care pathway for stroke survivors. At the moment, only half of stroke units have access to psychological support. That needs to change, and I should like to hear from the Minister what she plans to do about recruiting more
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clinical psychologists and putting in place those multidisciplinary teams to support stroke survivors. We ought to recognise, too, that the need for support is not a one-off; it might occur throughout life. That is particularly true, for instance, for children or young people who have suffered a stroke. We do not think of stroke as a disease of the young, but it can be, and young people often need support at particular moments in their lives—when they start school or dating or when they move away from home, for example.
Secondly, we must ensure that people get timely and accurate information about the services available to them, whether in the voluntary sector or in health and social care. At the moment, trusts differ enormously in the information they provide to people. We must also ensure that those who suffer from aphasia are talked through the information and helped to understand what is available to them. The voluntary sector has an important role to play in this. Many people find stroke clubs extremely helpful, for example. People who have suffered a stroke often feel alone, and mixing with others who have been through the same thing, learning from their experience and going out and socialising with them can be of enormous benefit.
Thirdly, I should like the Minister to pay attention to the need for all stroke survivors to get a proper assessment of their health and social care needs, and a written care plan. Although that should happen at the moment, people are telling the Stroke Association that they do not always get that assessment. In fact, one survey discovered that only 39% of respondents had had such an assessment, and that of those, only 60% got a written care plan. Good practice means that people should get an assessment six weeks after leaving hospital, then at six months, and annually thereafter. In fact, 47% of the people who said that they had had an assessment only ever had one. That needs to change. It is also vital that we support carers, and that they know the services that are available to them. At the moment, two thirds of carers say that they have received no support, help or advice on dealing with their emotional problems, and only a quarter say that they feel supported after the person they are caring for has left hospital.
As chair of the all-party parliamentary group on stroke, it has been my privilege to meet some remarkable people. I have met young people who are setting out on life with enthusiasm despite what has happened to them, determined to make a life for themselves, to work and to be part of the community. I have met people who have struggled with severe disabilities but still gone on to help others. I have met people who are determined to put something back into the community by setting up stroke clubs or using art to help others, and who see that as their way of paying back for the care that they have received. It has been an enormous privilege to meet people like that, but at the moment, we as a society are failing them by not giving them the help and support that they need to make a life for themselves after stroke.
I hope that the Minister will see the importance of bringing about change in this area by improving psychological services for stroke survivors in the same way that we have improved their physical care in the past. I look forward to hearing from her how the Government propose to take that forward.
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The Parliamentary Under-Secretary of State for Health (Jane Ellison): I congratulate the hon. Member for Warrington North (Helen Jones) on securing this debate on an important issue that affects so many of our constituents. She spoke with great knowledge and passion about the subject. I am also aware of the great work that she does as chair of the all-party parliamentary group on stroke.
Stroke is one of England’s biggest killers. It is the single largest cause of adult disability. Its effects can be devastating, both for those who have a stroke and for their families and loved ones. It is worth reiterating the great progress that has been made in tackling stroke, particularly the physical aspects, in recent years. Many thousands of people have benefited from that. Fewer people now die from stroke; mortality rates dropped by 37% between 2001 and 2010.
Treatment for stroke has improved in a number of areas, as the hon. Lady mentioned. Stroke patients do better when they are treated on a stroke unit, and over 83% of stroke patients now spend the majority of their hospital stay on a stroke unit. Access to immediate brain scanning is vital, and has improved considerably, as has access to clot-busting drugs, which give people a better chance of regaining their independence following a stroke. We all want that progress to continue, and that is why stroke remains a priority for the Government and the NHS. We also know, however, that we need to do more to improve support for people after stroke, which is the subject of tonight’s debate.
When it comes to national incentives to improve outcomes, stroke is covered in two parts of the NHS outcomes framework and the mandate to NHS England. Through the mandate we are monitoring how the NHS performs both in reducing mortality from cardiovascular disease, including stroke, and in improving recovery from stroke. Some stroke survivors are unfortunately left with long-term disabilities, as was said, so how we support people with long-term conditions will be important to them. Through the mandate, we are monitoring how the NHS is performing in supporting people to look after themselves; whether a person is able to live as normal a life as possible; and how successfully the NHS manages long-term conditions by looking at unnecessary hospital admissions and excessive length of stay in hospital.
Helen Jones: The Minister refers to the outcomes framework, but will she ensure that it focuses not just on physical rehabilitation, but on psychological support, because both are essential if people are to go on and build a life for themselves after stroke?
Jane Ellison: Quite. Because the focus of the framework is about recovery from the stroke, it includes exactly what she says—not just physical recovery, but psychological and emotional recovery, too. Much of what we are trying to do is to set about getting people on that full pathway towards recovery, not focusing only on acute symptoms and the immediate aftermath of the stroke.
The clinical commissioning group outcome indicator set mirrors the areas we are monitoring for stroke and for long-term conditions. This is the indicator set that will be used to hold CCGs to account and to provide information for the public on the quality of services and the health outcomes achieved through that local
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commissioning. The CCG indicator set also contains measures to ensure stroke survivors are discharged from hospital with a joint health and care plan, and receive follow-up assessments within about six months. I have heard what the hon. Lady said—that this is not happening. I have taken note of it, and it will be discussed with NHS England and all those responsible. It is our clear objective to do that. I appreciate the information the hon. Lady has given us about the Stroke Association’s work in monitoring whether it is really happening. It is obviously a priority. The new Sentinel stroke national audit programme will also monitor the outcomes of stroke care in all patients six months after stroke.
When patients leave hospital, it is important that the NHS and social services work together to get the right services in place to ensure they have the support they need to make the best possible recovery. The measures and indicators I have talked about, alongside a shared measure in the adult social care outcomes framework on the success of re-ablement and rehabilitation services, provide an incentive for the NHS and social services to work together to ensure that happens.
The adult social care outcomes framework is helping us to gauge the progress made by local services and to promote improvement in standards across the country. A key area of the framework is to reduce the need for care and support—exactly as the hon. Lady said—and delay any dependency. Those measures will support the sector to maximise people’s level of independence and minimise their need for ongoing support. Under the framework, local authorities will be able to compare their performance with that of other authorities around the country—we obviously want everyone to match up to the standards of the best—and to make improvements based on what has been proven to work elsewhere. Through that common focus for improvement, the NHS, public health and adult social care outcomes promote joined-up, integrated care, driven by the needs of the individual. For stroke survivors, this means providing access to the support they need to get that better quality of life.
I shall now deal more specifically with the issue of emotional and psychological support for people who have had a stroke. The cardiovascular disease outcomes strategy, published earlier this year, recognises that stroke services that incorporate psychological care deliver the best outcomes for people who have had a stroke. There are also national stroke strategy recommendations and evidence-based national guidance that patients should be routinely screened for mood and cognition after their stroke. These recommendations are included in the National Institute for Health and Care Excellence quality standard on stroke. That answers the question the hon. Lady posed about whether these were at the heart of what we saw as best care—very much so.
It is, of course, the responsibility of NHS England and CCGs to ensure that stroke patients receive the psychological and emotional support they need. NHS England recognises that this area of stroke care is of great importance for many patients. Improvement in community services with greater access to early supported discharge teams and longer-term rehabilitation is also high on NHS England’s agenda.
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an NHS programme that is rolling out services across England that offer interventions for people with depression and anxiety disorders. Many areas now have IAPT, which benefits people including those who are suffering from symptoms following a stroke. I understand that there have been discussions about how the IAPT teams might increase the proportion of the time that they spend with people whose psychological problems are secondary to physical disease, but are none the less important and—as the hon. Lady said—sometimes become more important as time goes on.
Some IAPT services have developed psychological support skills through enhancing the training of nurses and therapists, and some have employed the services of counsellors to support people who have had strokes in the community. I know that some of the good local examples of support for stroke survivors and their families are in the hon. Lady’s constituency. She will be well acquainted with initiatives such as the family support service, which helps stroke survivors and their families to adjust to life after a stroke, and the communication support service, which helps people with aphasia and other communication problems to cope. Stroke sufferers and their families can also receive emotional and psychological support via the local IAPT service.
It is for NHS England to consider how to spread best practice from services such as those in Warrington, using some of the frameworks that I have described. However, I am glad that the hon. Lady has taken this opportunity to bring the issue to Parliament, because I feel strongly that Parliament has an important role to play in highlighting great practice and spreading the word about good local initiatives such as those to which I have referred.
We recognise that, while supporting those who have had strokes, we must also support those who care for them. We set out our priority areas for action on carers in our paper “Recognised, Valued and Supported: next steps for the carers strategy”, which was published in November 2010. We have also made available to the NHS additional funding of £400 million between 2011 and 2015 so that carers can be given much-needed breaks to sustain them in their caring role. Carers are central to the Government’s proposals for care and support, and, as the hon. Lady will know, the Care Bill offers significant improvements in that regard. I am sure that we shall hear far more on the subject as the Bill progresses through Parliament.
Once again, I congratulate the hon. Lady on securing the debate and raising the profile of this very important issue. I shall consider the specific issues that she raised with which I have not been able to deal tonight. I shall also be happy to engage in a continuing dialogue with her and with the Stroke Association. I have read the association’s 10 key indicators and familiarised myself with them. However, the issue is so important to so many people that there must clearly be an ongoing debate about how we can ensure that the very best care is provided throughout the country, because we need the consistency to which the hon. Lady referred.