Wednesday 21st April 2021
A summary of the first evidence session held by the APPG. In this session, senior healthcare professionals and treated and untreated patients were invited to talk to the APPG about their experience of the heart valve disease pathway.
On Wednesday 24th March, members of the All-Party Parliamentary Group (APPG) on heart valve disease came together to hear oral evidence as part of the group’s review into the current standards of management and care for heart valve disease patients in the UK. The session was split into two sections, with evidence initially taken from members of the Heart Valve Voice Clinical Advisory Panel, followed by patient representatives. Alongside written evidence, these sessions will help to inform the APPG’s response to the ongoing consultation on a new NICE clinical guideline (Heart valve disease presenting in adults: investigation and management). Members of the APPG who took part in this session were:
- Steve McCabe MP (Chair)
- Baroness Masham of Ilton
- Virendra Sharma MP
- Jim Shannon MP
- Baroness Finlay of Llandaff
Professor Huon Gray (former National Clinical Director for Heart Disease at NHS England) acted as Co-Chair for this oral evidence session, in his capacity as Chair of the Heart Valve Voice Clinical Advisory Panel.
Section One – Heart Valve Voice Clinical Advisory Panel
Following a short introduction from APPG Chair Steve McCabe MP, Clinical Advisory Panel members were invited to introduce themselves and the professional society they were representing. The members who attended the session were:
- Professor Simon Ray, President of the British CardioVascular Society
- Dr Benoy Shah, President of British Heart Valve Society
- Dr Claire Colebourn, President of the British Society of Echocardiography
- Dr Jim Moore, President of the Primary Care Cardiovascular Society
The question and answer portion of the session then began, with Steve McCabe MP asking panellists about the assessment and diagnosis of the condition, noting that this was crucial to enabling timely assessment and advice on appropriate treatment. Based on this, Steve asked what steps should be introduced to ensure that people with heart valve disease are detected and diagnosed. In response, it was explained how guaranteeing that general practitioners (GPs) retain or be trained in echocardiography skills is essential, especially in regards to identifying when a murmur is innocent or pathological. Likewise, reducing the variation in access to echocardiography was also highlighted as a way to increase detection rates, and one suggestion to achieve this was the establishment of more wide scale access to diagnostics within community care settings. It was noted that there is no “one size fits all” solution to this variation however, but that nationwide the goal should continue to be to secure specialist access to echocardiography within four weeks of referral.
Witnesses also noted that workforce issues also had a significant impact on access to echocardiography, with more specialists needing to be recruited to keep up with demand. To highlight this issue, a 2016 study was referenced which stated that the UK required between 800 – 1,000 new echocardiographers to be trained over the next 4 to 5 years, a figure which is likely to rise due to the backlog in diagnostic testing caused by the COVID-19 pandemic. To help address this problem in the short term, triaging was suggested as the best way to ensure that those with the greatest need were able to access echocardiography in a timely fashion. In the long term however, it was suggested that more could be done to promote echocardiography as a potential career path for medical students, as well as addressing staff retention issues more broadly.
Meeting co-chair Professor Gray then moved the conversation on to patient surveillance, asking witnesses for their views on the most clinically and cost-effective surveillance for patients who do not currently require intervention, and those that have already received intervention (either surgery or transcatheter). In response, panellists explained that each heart valve requires surveillance at a different frequency rate, and that as a result, detailed information should be provided to cardiac departments to ensure that each patient is being assessed at optimal intervals. Unfortunately, anecdotal evidence was provided that patients who have been diagnosed with moderate heart valve disease are often not provided with adequate monitoring information, and that this was something that panellists agreed must be addressed.
The issue of regional variation was subsequently brought up again, this time in regards to the prevalence of GPs with a special interest in cardiology. It was noted that even where patients do not need to be referred for interventions, ensuring that specialist GPs are responsible for the management of the condition is an excellent way to ensure that patients are referred at the optimal time. Once referral has occurred, heart valve clinics were offered as a perfect example how clinical nurse specialists can take on responsibility for undertaking echocardiograms for patients that have undergone surgery, ensuring that pressure can be taken off surgeons and other secondary care professionals. Moving forward, it was suggested that these valve clinics could also be run by pharmacists, with strong links established between clinics, the patient’s GP and valve surgeon to ensure a joined-up monitoring process.
Baroness Masham of Ilton then posed a question on the topic of intervention, enquiring as to whether current intervention rates (both surgical and transcatheter) match the prevalence of the disease, and how the UK compares to other countries in this field. It was pointed out that unfortunately the levels of intervention in the UK does not match the prevalence of the condition, which was mostly due to a lack of or delayed detection. In fact, it was stated that the level of severe heart valve disease is not fully known, although it is likely to be higher than many suspect.
With regards to waiting times, it was noted that by 2019 the wait for cardiac surgery had largely become “a thing of the past” but that the COVID-19 pandemic had unfortunately undone a lot of this work. Optimism was expressed that waiting times could be reduced again in the future, but concerns were also highlighted around the fact that the rates of transcatheter aortic valve implantation (TAVI) procedures in the UK continue to lag behind much of Europe. In order to address this, panellists agreed that increasing access to diagnosis and treatment across the entire patient pathway would yield significant benefits.
The final question posed to Clinical Advisory Panel members came from Virendra Sharma MP, who asked what information, advice and educational materials the NHS could provide that would be useful to patients with heart valve disease, as well as their family and carers. Following discussions, it was agreed that the two most important areas where more detailed information should be provided to patients was regarding their surveillance regime post-intervention, as well as a list of reliable sources that patients could utilise to seek answers to specific questions they may have. The use of modern technology, such as specialist apps was also considered as an effective way to relay this information, and it was proposed that this could include a series of “red flag” symptoms that patients and their families would need to alert their GP to in the future. Virendra noted his agreement with this proposal, and also highlighted the need for all patient materials to be provided in multiple languages to ensure widespread accessibility.
At this stage, Steve McCabe MP thanked Clinical Advisory Panel members for their time and brought this section of the oral evidence session to a close.
Section Two – Patient Representatives
Following a short break, the meeting reconvened with Steve McCabe MP inviting the patient representatives to introduce themselves and provide a brief overview of their experience with the condition. The patients who provided evidence before the APPG were:
- Alison Banayoti, Treated Heart Valve Disease Patient
- Angie Martin, Treated Heart Valve Disease Patient
- Phillip Read, Untreated Heart Valve Disease Patient
- Olivia Gosney, Untreated Heart Valve Disease Patient
- Daniel Colgan, Treated Heart Valve Disease Patient
- David Eaton, Treated Heart Valve Disease Patient
Baroness Masham of Ilton subsequently began the question and answer portion of the session, asking the patients to share their symptoms, referral times, experiences and the impact on their quality of life as a result of heart valve disease. She also asked patients to provide their perspectives on what could be done to help improve and accelerate the treatment pathway based on these experiences. In response, a number of moving accounts were shared by panellists, including how the condition has limited employment opportunities, their freedom (such as the ability to drive) and led to debilitating side effects such as breathlessness and fatigue that prevent them from leading a full and active family life.
The role of the COVID-19 pandemic in delaying treatment was also explained, with patients noting that despite the fantastic work the NHS has undertaken during the pandemic, more can be done to ensure that they can access treatment and therefore improve their quality of life. Additionally, a specific point was raised around the work needed to be done to ensure that the various treatment options are fully explained to patients (especially younger patients), and that their wishes are taken on board by secondary care professionals.
As a follow-up, Virendra Sharma MP asked the patient representatives to what extent they had been involved in the decision making regarding their treatment and educated about the various options available to them. During their answers, patients indicated that they had to undertake a significant amount of independent research, with the British Heart Foundation and Heart Valve Voice websites being identified as specific sources utilised. Patient’s appreciated that these websites allowed for various forms of support e.g. videos and patient stories to be held in one place, reducing the need to undertake extensive research. The importance of social media groups was also highlighted as a way for patients to interact with others in similar positions. In particular, the way that social media groups allow for the exchange of information and advice, as well as general support was praised. Overall, there was a consensus amongst the group that patient choice was extremely important to them, and that more needs to be done to ensure the views of patients are actively considered and that support is easily accessible.
Unfortunately, several patients indicated that their treatment options were effectively decided for them without proper input, and in one case treatment was delayed until the patient became 60, so that they would be eligible for a tissue valve replacement. In another case, a patient was not offered TAVI treatment, despite this being their preferred treatment option. The patient in this scenario indicated that this experience had left them feeling “confused” and wanting to access a second opinion. Experiences did vary however, with some patients indicating that they were actively consulted by clinicians and felt empowered to ask questions and shape their treatment programme.
Finally, Virendra Sharma MP asked the group what information and support was made available to them during the diagnosis and treatment process, and if this had any impact on their mental health. Patient representatives confirmed that the process has had a significant impact on their mental health, with one patient noting that they had “really struggled” due to delays in treatment. This feeling was exacerbated by the condition meaning that they were unable to be prescribed anti-depressants by their GP. Patients also reported that they often had to fight “tooth and nail” to access rehabilitation services, a factor that also had a debilitating impact on their mental health. This impact however was often not realised until after support had been received, and patients noted that the fact this experience was shared by so many, indicated that more needed to be done to address this lack of access.
In terms of the information received, patients explained how this mostly consisted of a few informative leaflets and verbal advice. They noted that it would be useful to receive more written information, so that this can be shared with friends and family. Also, this information needed to be updated on a regular basis, given that many of the documents they had received were several years old. Again, the point was also raised that the information available to younger patients in particular was significantly lacking and that more thought should be given to ensuring that all age groups are adequately considered by the NHS and charitable organisations when drafting patient guidance. Baroness Finlay then provided her suggestion that a series of video clips be uploaded to a patient app to help answer the most common questions that heart valve disease patients have, in a way that is easy to understand and tailored to their needs. The panellists agreed that this would be beneficial for the patient community, and offered their support should any such programme be launched in the future, especially as the terminology used in much of the supporting documentation they received was often hard to understand for a non-medical professional.
The patient representatives then concluded by offering their view that a national educational programme for GPs would be beneficial, as well as a nationwide campaign to ensure that over 65s receive regular statoscope checks to help identify heart murmurs in this at-risk demographic. Steve McCabe MP then thanked the patients for agreeing to provide oral evidence and wished them well for their future treatment and recovery.
The meeting closed with a recap of the main topics discussed from Steve McCabe MP, who reiterated that the APPG would continue to receive both written and oral evidence from a wide range of stakeholders in the upcoming weeks, to help inform the publication of a public report and the group’s response to the NICE guideline consultation. He went on to highlight that a further oral evidence session would take place on Wednesday 14th April, where the APPG would hear from representatives from the MedTech and pharmaceutical industries, as well as patient advocacy groups. He then thanked all attendees for their time and brought the oral evidence session to a close.