Summary of Question & Answer session – Southampton 2022 Conference

The panel comprised one Somerville Heart Foundation (SHF) Trustee, Conference speakers and staff from Southampton and Oxford Hospitals.

Questions were posed anonymously to the panel which comprised:

Rob Nicoll (Vice President, Somerville Heart Foundation)
Lynda Tellett (Clinical Lead Nurse, Southampton)
Tom Pierce (Retried cardiac anaesthetist)
Emma Weingart ( Clinical Nurse Specialist, Oxford)
Dr Nang Kyi (Southampton)
Mary Reid (ACHD ward sister, Southampton)
Just Deinum (ECHDO)
Richard Bird (Mental Health and Wellbeing Counsellor, Somerville Heart Foundation)

*Question answered by SHF later to save time on the day and with some updated content

Could we set up support groups meeting weekly within SHF?

(Rob Nicoll) Yes, we could, but at this time, following the pandemic, we are reappraising what we do.

*We need to test demand first as weekly may be too frequent – we are starting with a session in September for those on the transplant pathway who would like to talk to others in a similar position and hear from those who have had a transplant too. This will be facilitated by Richard and we will go from there, possibly with regular groups and different topics (?) covered

*Where do we see the foundation going forward?

(SHF) We are going from strength to strength – the past year has seen us rebrand with our new charity name and logo and a new name for our newsletter – Upbeat (formerly GUCH News). Our Friends & Supporters scheme has been running for just over a year, with many new sign ups each week

We continue to support all young people and adults born with a heart condition. We will be focussing on a number of areas in the coming year including; the needs of young people, community engagement (watch this space!) and expanding our wellbeing services.

And celebrating the charity’s 30th Birthday celebrations in 2023!

How can patients help the Somerville Heart Foundation achieve its aims?

(SHF) *We are thinking more about the different ways people can support us, by utilising their existing skills eg for a particular project rather than a regular commitment and focus groups are a great example of the value our members can add

Do the standards need to be updated, especially in a post covid world where we mostly have video calls and declining numbers of surgeries?

(Dr Nang Kyi) ACHD standards were written before Covid. The standards have not changed but how we deliver these has had to change in view of Covid. Covid adds layers of caution, and we are looking at staff and patient safety, but we are in the recovery phase now. We are using more technology and contacting patients by video call and telephone but continue to see patients face to face if needed or requested. All who needed surgery got it, this has not changed.

If some aspects of care delivery have been changed post covid has there been validatory work conducted to ensure compliance with the standards?

(Lynda Tellett) A satisfaction survey was conducted of over 100 patients, and the result was that patients were hugely satisfied with our service throughout Covid. All services continued.

(Emma Weingart) There will be a review process.

Are nursing levels being maintained and do you think that recruitment of new nurses and other medical practitioners will be a problem over the next few years?

(Mary Reid) Staffing has always been a challenge, but it has become a massive challenge during covid with the need to staff covid wards and staff absences due to covid.

(Lynda Tellett) The problem we have is that we need more specialist nurses, but general nurses are cheaper.

How have ACHD patients coped with Covid? Will they get another vaccination in the autumn?

(Melanie Finch) Patients who have been fully vaccinated have experienced less symptoms.

We are not sure about vaccinations but assume those classed as clinically vulnerable and at risk will get another vaccination in the autumn, but we are not sure whether all CHD patients will be in this category.  We think those with extreme cardiac disease will be included. Those providing social care will also need to be considered. We continue to follow government guidelines and strategies and our nurses wear masks and use social distancing to make staff and patients as safe as possible.

Question for Dr Tom Pierce. What is the best way to prepare for surgery?

(Tom Pierce) This a good question and extremely topical. Having surgery is like doing a 10k run, patients need to prepare. Graded and appropriate exercise to improve cardiac fitness is good. No exercise is bad. CPOC have leaflets that may be of use in this area. Walking, running & cycling are good. An easy exercise to try is to sit in a chair and then stand without using your arms. This can be repeated and increased with time.

There are specific heart conditions for which the cardiologist will suggest limited exercise.

It is also important to look at lifestyle: smoking, alcohol, diet, obesity, diabetes.

What exercises should be avoided?

(Dr Nang Kyi) There is no bad exercise. Everything should be done in moderation.

Anything causing undue breathlessness or angina should be avoided. Being puffed out is ok, if you can continue a conversation. Weightlifting with weights up to 25KG is ok little and often, but heavy weightlifting should be avoided. You should always check with your Specialist Nurse, Cardiologist or Physiotherapist.

(Lynda Tellett) If on anticoagulants, avoid contact sports.

Why has no one heard of the Somerville Heart Foundation? What can we do to improve wider awareness?

(Rob Nicoll) Within the area of ACHD we are well known but outside of that we could do better. The addition of ‘heart’ to our name has helped. Throughout the pandemic literature left in hospital waiting rooms was all removed, for safety, and this has been a challenge for us. Just Deinum suggested “all members should be ambassadors”. In the past we were partly funded by BHF and many people don’t realise that when funds are raised for BHF now we do not benefit.

 *What is Somerville Heart Foundation doing to help the older ACHD patient?

(SHF) We held Focus Groups in 2021 with those growing older with a heart condition – attendees highlighted 5 key areas of concern; general health and lack of GP awareness of living with CHD, the changing nature of patient care, financial concerns, combatting loneliness and isolation, and ways we can help connect people.

We are addressing these key areas through webinars and events. We are also able to signpost queries and concerns to a benefits specialist, we ran benefits and finance webinars, attended the conference of the Royal College of GPs, run a fortnightly wellbeing zoom session with our counsellor and have been looking at setting up a buddy/befriending/mentoring scheme. This however raises safeguarding and GDPR considerations which need much more work than years ago

We also hope to work on a program of intergenerational contact – supporting others through lived experiences – what worked (or didn’t work well), and what to expect at different life stages.

 What activities are the foundation planning to do to engage with the younger age range?

(Rob Nicoll) During the pandemic we arranged some specialist webinars for older patients, and we have addressed that. We want to support all areas, young and old, age-related illnesses, families, and patients and again the more volunteers we have the more we can do (skills and resources people can offer us are so valuable). We are always here if you need us.

How can the services be regulated across the country to enable all patient to receive the same standards of service?

(Rob Nicoll) Fundamentally centres get reviewed. This was paused doing Covid but will restart. Drs and nurses across the centres meet regularly and are always in contact with each other.