Patients with Heart Failure

Jim Shannon Excerpts

Thursday 11th March 2021 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered quality of life for patients with heart failure.

It is an absolute pleasure to serve under your chairmanship, Mr Mundell, and I look forward to this debate. Believe it or not, I applied for it this time last year. It has taken that long for the opportunity to come round. It does not matter that it did not happen in March or April last year; I am pleased that it is happening now. That is the important thing.

I am very pleased to see Members virtually and in person. I look forward to the contribution from the shadow Minister, the hon. Member for Ellesmere Port and Neston (Justin Madders). It is a pleasure to see the Minister. I have already enjoyed her company for an hour and a half, and now I will enjoy it for another period of time. We will see how we get on.

I am delighted to have been granted this important debate and I am particularly pleased to see Members from across the House present to take part in it. Heart failure is a progressive, long-term condition affecting nearly 1 million people across the United Kingdom of Great Britain and Northern Ireland; nearly 20,000 people have been diagnosed with it in Northern Ireland alone. I am my party’s health spokesperson, so I am pleased to present the case, and as we are on the UK mainland, I ask the Minister to respond.

I am pleased to see the hon. Member for Birmingham, Selly Oak (Steve McCabe). He and I had an opportunity to observe an operation at St Thomas’ Hospital. I was telling the shadow Minister about it. I will not go into the details, but the hon. Member for Birmingham, Selly Oak will remember it well. The operation was on someone who was having a stent put it. I thought we were going to have a wee chat, and was not fully aware that we were going to see it. When I got there, I suddenly found out. We were in the blue surgical gowns, had the body armour on and were present as the gentleman had his operation. The hon. Gentleman was more prepared than I was; he survived it, and I just about survived it. So, we have seen that in person, and I am sure the hon. Gentleman will make a valuable contribution later in the debate.

Around 98% of people in this country who have heart failure live with at least one other long-term health condition, and many have complex care needs. Living with heart failure means that the heart cannot pump blood around the body as effectively as it should, and it usually occurs as a result of a heart attack, high blood pressure or congenital heart disease, though there are other causes. As people get older, their bodies get weaker. I hope you are an exception, Mr Mundell. I myself am on a list of tablets, and during the last debate, about pharmacies, I knew my tablets were in my pocket, and I was thinking about them when the Minister was speaking, so I know what it is like to live with a disease. In my case, it is high blood pressure and diabetes, not heart disease.

At present, it is not possible to cure heart failure, as there is no way to repair damaged heart muscle, so people with that condition can live their lives dealing with severe fatigue and shortness of breath, among other symptoms. A young lady called Tara Loughlin from Ballyclare was diagnosed with heart failure at the age of just 41, as the result of a rare heart muscle disorder. Tara had symptoms such as breathlessness and extreme fatigue for years. She visited her doctor multiple times with those symptoms. Only when she felt very unwell one day and was referred for an echocardiogram, which is an ultrasound scan of the heart, did she receive the diagnosis of heart failure.

Unfortunately, a significant delay between identifying symptoms and a diagnosis of heart failure is common for many people with the condition. I will speak about that more as we go forward. Life changed forever for Tara, who is a keen runner and loves nothing more than walking her dogs or working up a sweat in Zumba classes. People might think that Tara looks well from the outside, but in fact she battles extreme fatigue and wakes up exhausted and breathless. She gets severe fluid build-up in her hands and legs, to the point where she cannot wear jeans. Tara says this gets her down. Before, she loved clothes and going out, but she is now forced to wear looser clothing and stay home. She said she has still not come to terms with her diagnosis, and the same is applicable to many other patients across the United Kingdom.

Sadly, around half of people diagnosed with heart failure in the UK will die within five years of the diagnosis, but that can be improved; we can do better. With early diagnosis and access to the right treatment, care and support, people can manage their symptoms. Perhaps the Minister will tell us something about that in her response—I look forward to hearing what those things might be. They can have a better quality of life and live longer, which has to be good news.

That, however, has not been a reality for many people with heart failure, which is why the debate is being held —to look at those people who might not be getting what they need. At the end of my speech, the Minister will have heard the four questions that we are asking, and I hope she will be able to respond. We might ask a few more on the way; we do not want to let her off with just four, if we can help it.

As we all know, health services across the country are under unprecedented pressure, and I express my deep gratitude to all frontline staff who work tirelessly to provide care to people who urgently need it. It is vital that we do not lose sight of people with heart failure who may not be able to access the care and support they need at this time, and who may become more unwell as a result. The same is true of other things—for example, cancer has been a big issue, and the Minister understands that disease better than most—but I seek clarifications and reassurance on heart failure.

In 2016, the all-party parliamentary group on heart disease made 10 recommendations to improve heart failure care in England. Its inquiry highlighted issues and opportunities across the patient pathway, including the need to raise awareness of heart failure among generalist medical professionals, so that they understand it. I know that they are experts, but they deal with lots of problems. It would also be good to improve the information given to patients at the point of diagnosis, and to ensure that all patients can access the specialist care needed from a multidisciplinary team. They should also be able to access rehabilitation services and timely palliative care.

Unfortunately, insight gathered by the British Heart Foundation and others suggests that progress has been slow in realising the recommendations. Perhaps the Minister will reassure us about the 10 recommendations made by the APPG in 2016. Services are still not always joined up or consistently addressing the needs of people with heart failure across the patient pathway. That variation starts at diagnosis.

We always say that diagnosis is so important—it is critical—but many people are still diagnosed late and in inappropriate settings. Research shows that although 40% of heart failure patients display symptoms that should trigger an assessment in primary care, as many as 80% of heart failure cases in England are diagnosed in hospital. That can lead to worse outcomes and higher mortality rates. Why has that happened? That is one of the questions that we want to ask.

Staffing shortages and variable access to echocardio- graphy—a key tool for diagnosing heart failure—in primary care and the community are just some of the reasons for late diagnosis. Again, we seek from the Minister some assurance that such issues are being addressed. N-terminal pro B-type natriuretic peptide testing—a blood test that helps in the diagnosis of heart failure—is another key tool, but it is still not routinely available or appropriately used in primary or secondary care settings across the country.

Heart failure can also be challenging to diagnose. What is happening on that? Are we are seeing an improvement? I look forward to the Minister’s response. I know her well, and I am quite convinced that we will get the answers we seek, which will help to alleviate some of our fears and concerns. Symptoms are variable and can be confused with those of other conditions, meaning that it is easy for those without specialist expertise to miss the signs of heart failure. I sometimes wonder how that can happen, but it can, because of the system that we have. Better training of generalist healthcare professionals and improved access to key diagnostics will be critical to improving outcomes, while early intervention allows people with heart failure to live with a better quality of life for longer. I gave an example of that earlier. Their quality of life can be better, and they can live longer as well.

There is also significant regional variation in the quality of care patients receive following admission to hospital; the percentage of patients seen by a specialist is reported to be 100% in some hospitals in England and Wales but less than 40% in others. Why the variation? Specialist input during admission is key, because it increases the likelihood that patients receive the drugs and referral to ongoing support that they need. It is important to note that the audit does not include data from hospitals in Northern Ireland, as this is obviously a devolved matter, although the National Institute for Cardiovascular Outcomes Research seeks the participation of our hospitals back home for future reports. I intend to follow up on that, and I will replicate every question I ask the Minister here to the Minister who has responsibility for this in Northern Ireland.

Regardless of where a person is diagnosed, National Institute for Health and Care Excellence guidance recommends that heart failure be managed by a multidisciplinary team with relevant expertise to optimise medications, provide the necessary information about heart failure and its treatment, and refer patients to other services, such as rehabilitation and palliative care, as needed. Again, it would be helpful to know from the Minister exactly where the multidisciplinary team plays its role.

Hospital data shows that, in 2018-19, only 41% of patients discharged from hospitals in England and Wales were recorded as having relevant follow-up with a member of the multidisciplinary team within two weeks of discharge. That figure concerns me. We need reassurance that that shortfall is being addressed, and that, in the long term, a much larger number of patients will have that treatment and this problem will no longer occur. Access to multidisciplinary team-led care is vital for improving outcomes for people with heart failure. As well as treating the acute episodes that bring someone with heart failure into hospital, it is really important that healthcare services treat each person as someone living with a long-term condition, giving them the tools to self-manage and access routine care in community settings.

Only 13% of patients admitted to hospital were referred to cardiac rehabilitation services at the point of discharge. Many of these services have been severely depleted by the pandemic. I understand the pressures that the Minister and the Government are under, and I know how hard they work to try to address these issues, but that really is a small number, so we need reassurance on that. I found evidence that some people are even disappearing, and others are moving online. Perhaps the follow-up is just not done in the way that it should be.

Rehabilitation services offer a range of support for patients, including exercise to improve cardiac function, advice on living healthier, and psychological and peer support. How important is peer support? It should be there, if at all possible. It is the family around the patient who give them the help that they need. Many people with heart failure who have been referred to rehabilitation services describe them as having a major positive impact on their wellbeing. Many rely on these services to help them exercise safely and to provide the emotional, psychological and physical support needed.

Very few people with heart failure are referred to palliative or hospice support, or are referred late. This is partly due to the disease trajectory of heart failure. Many patients can experience several acute episodes, after which they recover, making it hard to know when they are truly at the end of their life. This means that end of life care decisions may be made late for many heart failure patients, which limits the time for advanced care planning, and increases the chance that professionals without the necessary palliative care skills will deliver inappropriate care at the end of patients’ lives. I find that disturbing—we all do—but it tells us that we have to look at this issue. This reduces the chances of patients having their wishes around their end of life treatment being met.

Although these statistics are not published by nation, it is concerning to see that referrals to cardiac rehabilitation services are low, and that conversations about end of life care are not starting as early as possible during a patient’s heart failure journey. This disrupts their chances of receiving the care they need and of their wishes being met at this critical time. To avoid this, we must stop treating each healthcare touchpoint in isolation. By focusing on the person and taking a full pathway approach, we can avoid disjointed care and better address all care needs, including psychological support and end of life care. Clear leadership across the whole pathway is vital.

Strong leadership in heart failure services has led to significant improvements in care in Scotland. I often look to the Scottish health system with a purpose, because it is always good to share. They have some advantages and have taken good steps—I welcome that. The Scottish Heart Failure Hub is working to raise the profile of heart failure among decision makers and spread best advice across the nation. This has allowed it to respond quickly to the impact of coronavirus. Health services across Northern Ireland, England and Wales must follow suit, identify strong leaders of heart failure services, and give the resources needed to drive change across the pathway, both nationally and regionally.

Despite improvements in heart failure therapies over the past two decades, the risk of premature mortality remains high among heart failure patients. There are inequalities linked to characteristics including age, ethnicity and gender, and details such as geographical location and socioeconomic status. The variability in mortality can be linked to how quickly someone is diagnosed with heart failure and the severity of their condition at diagnosis, the number of times that they are readmitted to hospital, and whether they receive support following discharge.

Socioeconomically deprived groups have consistently worse outcomes than the most affluent. They face a 20% higher risk of hospitalisation, even after adjustment for other factors. This inequality has persisted for several decades. Again, I ask the Minister, what has been done to address this continual problem? Access to important services, such as rehabilitation and other relevant recovery and support services in primary care and the community, can also vary as a result of demographic factors, geographical location and socioeconomic status. It is vital that comprehensive demographic data be collected, so that we can better understand the inequalities in access to care and healthcare outcomes. This will help those with worse outcomes to receive better care. Government, and the Minister in particular, must act to ensure that no one is receiving substandard care just because of their age, ethnicity, or gender, where they live, or their economic status.

It is likely that the coronavirus pandemic has exacerbated all the issues that I have talked about—we all know that. Little did we know this time last year, when we were coming into the covid-19 episode, that we would still be in it a year later. I certainly did not. We all thought that the summertime would be better, but that was not the case. The Government’s strategy and response, here and in the devolved Administrations, together with the vaccine roll-out, has enabled us to look forward with positivity. I give the Government credit for this: there is no doubt in my mind that the Government pushed that and made it happen. From the regional point of view, we in Northern Ireland thank them. Over 600,000 of our people from Northern Ireland have had their covid-19 jab. On Monday coming, at 20 minutes to 5 in the afternoon in the Ulster Hospital, I will have my covid-19 jab. I will go and get the other one about eight weeks later.

While the NHS has rightly prioritised providing urgent and emergency care, the redeployment of clinical staff, combined with the need to maintain social distancing, has resulted in a significant amount of routine care and treatment being postponed. I understand that, but the question is: how do we address the problems that are being caused even now?

The postponed care and treatment include routine appointments that allow for review, opportunities for medication optimisation and access to treatments to prevent the exacerbation of conditions. These are the interventions that enable people with heart failure to maintain a good quality of life, and without them we risk patients becoming more unwell, adding to urgent and emergency care needs, and to a rapidly growing backlog of people for health services to deal with as we come out of the pandemic. That is being seen not just with delays to treatment, but with delays to diagnosis. Again, the issues are very clear.

Although we do not have figures for Northern Ireland, figures from NHS England show that completion of echocardiograms—as I mentioned before, these are scans that can detect heart failure, so it is very important for people to have them—fell by around two thirds, or 67%, in April and May 2020, compared with February 2020. While I understand that there was some improvement throughout the rest of 2020, for which I give credit, can the Minister say whether we have caught up yet and matched the figure from before the pandemic?

The use of echocardiograms has struggled to return to pre-pandemic activity levels, meaning that waiting lists have remained long—perhaps even longer than they should have been. As a result, thousands of heart failure diagnoses are likely to be delayed or even missed, with potential implications for people’s long-term health and quality of life.

The fall in the number of people presenting to hospital with heart failure has also been dramatic, dropping by 41% in England as we entered the second wave of the pandemic. I believe that there is limited information about how these missing patients may or may not have accessed care and support during this period. It seems that many people with heart failure have fallen through the cracks since the pandemic began, adding to the picture of disrupted and fragmented care. Again, I seek an answer to this question: has the Minister any figures or statistics that can identify these missing patients?

While some parts of the country lost heart failure services altogether during the first wave, due to redeployment of heart failure specialist teams to the initial covid-19 response, other parts maintained a skeleton service. The impact on services, combined with the continuing reduction in capacity to deliver face-to-face care, has meant that many people with heart failure have struggled to access the support that they need.

Organisations such as the British Heart Foundation—I work quite closely with it; indeed, I think it works quite closely with everyone—have stepped in to provide information, for example through the BHF’s heart failure online hub and heart helpline. It is vital that people can access the health and care services they need to live well during, and indeed beyond, the pandemic.

The BHF has highlighted in its report, “Heart failure: a blueprint for change”, that one of the main problems is that there is a lack of co-ordinated data outside hospital settings, and particularly in primary and community settings. This has meant that a significant proportion of the heart failure community has been largely invisible to the system during the pandemic, and opportunities to drive real system change have been lost. Again, the information and statistics that the BHF has been able to gather show that many people with heart problems went missing during the pandemic.

The covid-19 pandemic has clearly exposed the huge inequalities in care that people have been experiencing for years. I believe that now is the time for stakeholders across the health service and the Government, and parliamentarians, to come together and seize the opportunity to build back better. I want to ensure that each and every one of the 860 people diagnosed with heart failure in Strangford in the last year, and the thousands more across the United Kingdom of Great Britain and Northern Ireland who have received a similar diagnosis, has the opportunity to live a better quality of life, and that we all have an opportunity to create better outcomes for everyone living with this condition.

I have four asks—indeed, I made a few asks throughout my speech and I know that the Minister has been writing them down. However, there are four key asks that I hope the Minister will respond to at the end of the debate. I will conclude with them.

First, system leaders must take a full pathway approach to improving services. By focusing on the person and taking a full pathway approach, we can avoid disjointed care and provide better support for patients, including addressing their psychological and emotional needs, from diagnosis to end of life.

Secondly, we must stop just treating the acute episodes that bring someone with heart failure into hospital, and instead treat each person as someone living with a long-term condition, providing them with the tools to manage their condition and access routine care in community settings.

Thirdly, leadership across the pathway will be vital. Recruiting heart failure champions at regional and national levels—it is really important that we do this—will help to strengthen leadership and accountability for services, and lead to significant improvements in care.

Fourthly, collecting more reliable, comprehensive and timely data across the whole pathway could break down the barriers to improving heart failure services and drive real system change. I do not know how many debates the Minister and I have been at, but the issue of data comes up continuously. That data will prove where we need to focus the attention, and I think that is what we are likely to do.

In conclusion, for too long people with heart failure have not been given the chance to live well with their condition, and the pandemic has disrupted opportunities to make that a reality for more people. I believe we owe it to those people to finally address this issue and give everyone the opportunity to live well for longer. I thank those who are going to speak for their participation, and look forward very much to the Minister’s response.

--- Later in debate ---

[Jim Shannon]

First, I very much thank the hon. Members for North Ayrshire and Arran (Patricia Gibson) and for Birmingham, Selly Oak (Steve McCabe). The hon. Gentleman in particular referred to the APPG which was started up four or five weeks ago. We look forward to working with many others, and we will probably hold an inquiry about providing a better quality of life.

I am quite friendly with the hon. Lady, but I did not know that her father and stepfather both died from heart failure, which is a very personal thing. She also mentioned poverty and socioeconomic status—to which the shadow Minister, the hon. Member for Ellesmere Port and Neston (Justin Madders) and I referred, and the Minister responded—and how that can impact on way of life, affecting us all. She also referred to tackling at source inequality and poverty. We all heard the Minister respond and how she understands that.

I thank the shadow Minister very much for his contribution. He, too, referred to the social and economic backgrounds in which people are severely impacted; to the pandemic’s impact on heart failure; and to late diagnosis, which we all realise is an issue.

In particular, I thank the Minister very much. I always do, but I mean it, because that was a very comprehensive response. We are all heartened by that. You would not have given me the time, Mr Mundell, to go through all the things on which the Minister responded, but what she said was marvellous—quickly, the cardiac rehabilitation input, the community diagnostic hubs, the NT-proBNP community specialists, the primary care network NICE guidelines and the GP surgeries gathering the data. As the Minister, the shadow Minister and we all said, data is very important—with the data, we can focus the strategy on where we want to be.

There are life changes to make and so a role for us all to play, including me. I am a diabetic today, because of my lifestyle. I did not know what I was doing—or I did not know until too late—and it was all that Chinese food, plus two bottles of Coca-Cola. I would not recommend it. My sugar levels were extremely high. Add a bit of stress to that, and all of a sudden, someone becomes a diabetic. I am guilty of that, but I am saying that we all therefore have a role to play.

I thank everyone for their contribution, you for your patience, Mr Mundell, and the Minister in particular for a comprehensive and helpful response. We appreciate it.

Question put and agreed to.

Resolved,

That this House has considered quality of life for patients with heart failure.