Minutes of the Meeting of the APPG on Vascular and Venous Disease – September 30th, 2020
Meeting overview
In tandem with Vascular Awareness Month, the VVAPPG sought to raise awareness on the impact of venous disease to the thousands afflicted by it across England. The meeting facilitated a conversation between venous healthcare professionals, patients, and policy makers on the human consequences of poor access to care and discussed what actions may help improve people’s experience of care and health outcomes.
Agenda
Meeting starts
15.00 – 15.05 Welcome from Emma Hardy MP, Chair, All-Party Parliamentary Group on Vascular and Venous Disease
Superficial venous disease section
15.05 – 15.15 Clinical presentation – Mr Manj Gohel, Consultant Vascular Surgeon
15.15 – 15.30 Patient presentation
15.30 – 16.00 Group discussion
Dr Una Adderley, National Wound Care Strategy Programme Director
Mr Manj Gohel, Consultant Vascular Surgeon
Dr Leanne Atkin, Vascular Nurse Consultant
The Rt. Hon. Ann Clwyd, Former Member of Parliament for Cynon Valley and Patient Representative
Deep venous disease section
16.00 – 16.10 Clinical presentation – Mr Stephen Black, Consultant Vascular Surgeon
16.10 – 16.25 Patient presentation
16.25 – 16.55 Group discussion
Mr Taha Khan, Consultant Vascular Surgeon
Mr Stephen Black, Consultant Vascular Surgeon
Dr Julie Bayley, Patient Representative
16.55 –17.00 Closing remarks from Emma Hardy MP Meeting adjourns
Discussion Summary
Superficial venous disease section
Emma Hardy MP, Chair of the All-Party Parliamentary Group on Vascular and Venous Disease, opened the event by highlighting the importance of improving patient care for Venous Disease and discussing the activity of the APPG regarding this issue.
The first session began with a clinical presentation from Mr Manj Gohel, Consultant Vascular & Endovascular Surgeon at the Cambridge University Hospitals. The presentation gave a clinical overview of the conditions covered by the term superficial venous disease, particularly venous leg ulcers, and the devastating impact that these conditions had on patients.
Attendees then heard from Ann Clwyd, a former Member of Parliament who had lived experience of venous leg ulcers. She spoke of her own experience and the failings in provision of care that she had witnessed.
The discussion was then opened to the full panel. Attendees further discussed the impact of these conditions on patients and the existing work of groups to address them, including the National Wound Care Strategy Programme.
The key point of agreement in the discussion was the need for improved joined-up working between the multiple relevant clinical disciplines in the treatment of superficial venous disease. Too often, patients were slipping through the system with inadequate treatment as a result of “silo working”, it was highlighted.
By joining up existing services in both hospitals and in community care, attendees heard that the NHS could ensure that nurses, surgeons, GPs and radiologists were all working together and patients were seen by all the relevant services quickly.
Panellists agreed that, in the long-term, there was a lot that could be done to prevent venous disease from occurring in the first place. This would be particularly linked to tackling co-morbidities. However, panellists noted that in the short-term, there was such a significant burden of existing leg ulcers already in the population that had to be addressed as a priority before longer-term proposals could be successful.
It was noted that the burden of these conditions was not evenly distributed, and there were significant implications for health inequalities. Pregnant women, the elderly and people from disadvantaged backgrounds were disproportionately affected by venous disease.
The importance of listening to patients and pressuring policy makers to address the issues raised during this discussion was reiterated by the panel. Clinicians and patient advocates needed action by policymakers in order to realise the changes highlighted during the session, it was agreed.
Deep venous disease section
Opening the second session of the meeting, a presentation from Mr Stephen Black, Consultant Vascular Surgeon at Guy’s and St Thomas’ Hospital, gave a clinical overview of deep venous disease and highlighted the impact of the condition on patients.
Dr Julie Bayley, a Chartered Health Psychologist diagnosed with deep vein thrombosis and post thrombotic syndrome, provided a presentation of the patient experience of deep venous disease the devastating impact on quality of life, and her own experience of deep vein thrombosis and its treatment.
The issue of joined-up care was reiterated, with a particular note that timely diagnosis and referral to appropriate clinical pathways was vital to mitigating as much of the burden of venous disease as possible.
The importance of discussing the impact of these conditions in terms of quality of life, rather than just mortality, was discussed. DVT had significant implications in terms of mortality, but panellists noted that too often the impact on mobility, social isolation and long-term pain were overlooked as burdens of the condition.
Raising awareness of venous disease amongst both the public and clinicians was discussed at length, as it was only relatively recently that clinical attention had been paid to deep venous disease. It was highlighted that ensuring that patients were educated about the conditions they were experiencing and aware of what clinical options were available to them would be vital to improving care.
Inequalities within the healthcare system were highlighted, with panellists referring to a “post-code lottery”. Patients in different areas of the country had markedly different access to care, depending on local health budgets and commissioning policies. Panellists expressed a desire for policymakers to review this to ensure equality of access to care while maintain appropriate local control of health policy.
Emma Hardy MP concluded the meeting. She thanked participants and attendees for their interest and work on addressing these issues, and noted that the APPG would take the conclusions of this meeting forward in its advocacy to policymakers.