Reassemble our Heart Failure Teams

Findings revealed of first patient survey into the impact of COVID and Heart Failure care in the UK

Under 60s report the highest levels of anxiety

65% have reported disruption to care appointments

Following on from a recent survey around hospital admissions during COVID-19, a study has revealed the reasons WHY many people with heart failure have fallen through the cracks of the NHS since lockdown.

With up to 40% of people dying within one year of a Heart Failure diagnosis, new research has been carried out, for the first time, on the effect of the pandemic on services and support for the 920,000 people living with heart failure in the UK.

A leading UK patient-led charity, The Pumping Marvellous Foundation, has released the study findings, the first of its kind, looking at those living with a chronic health condition (heart failure) in England, Scotland, Wales and Northern Ireland from 10 NHS Hospitals and the charities community of people living with heart failure.

This unique research was designed by patients and heart failure specialists, for patients, to look at why people are staying away from hospitals and the patient conversations that are happening, including the assumption that hospitals are now only treating COVID patients. The other objective of this survey was to ascertain patients’ views regarding the newer models of care such as tele-health strategies.

Heart Failure patients were asked to rate their anxiety about Heart Failure and COVID-19 on a scale of 0 (no anxiety) to 10 (highest anxiety level).

Over 1000 patients from England, Scotland, Wales and Northern Ireland responded to the survey. The survey found that:

The COVID-19 pandemic has caused significant anxiety amongst HF patients regarding COVID-19 and Heart Failure. Cancellation or postponement of scheduled clinic appointments, investigations, procedures, prescription and monitoring services were implicated as sources of anxiety.

Interestingly despite older people having a predilection for more severe COVID-19 illness, anxiety levels were greater amongst the younger group of patients (aged up to 60 years). This is contrary to the common perception that older patients are likely to experience more anxiety due to a combination of social isolation as well as fear of contracting severe COVID-19 illness.

This result may be in part due to the greater degree of disruption to clinic appointments and monitoring, as well as interruption to HF medication prescriptions amongst younger patients.

The study highlighted that:

  • 65% of respondents reported disruption to Heart Failure appointments.
  • 43% rate of cancellation of scheduled hospital clinic appointments and 22% cancellation of community HF clinic appointments
  • 37% of cardiac investigative or procedural appointments have also been cancelled (46% postponed), with the most commonly reported cancelled procedure being pacemaker implants
  • 375 of respondents reported disruption to medication and prescription services
  • 32% of patients also expressed reluctance to attend hospital appointments
  • 25% said they would only attend hospital if there was no alternative
  • 7% said they were too afraid to attend hospital at all

Respondents were also asked to choose service changes or new models of care that they would prefer to be continued or to be introduced in their local Heart Failure services. An overwhelming majority (71%) chose the ‘One stop diagnostic Heart Failure clinics’, consisting of a single visit incorporating Heart Failure consultant review and echocardiography

Pivotal findings of the survey also include that the increased use of tele-management of patients is the least popular with older patients who may struggle with hearing impairment and struggle with this method of communication.

Dr Rajiv Sankaranarayanan Consultant Cardiologist and Heart Failure Clinical Lead from Aintree University Hospital (Liverpool University Hospitals NHS Foundation Trust) and lead author of the study said: “It is crucial that the mistakes of the first wave are not repeated in subsequent waves of the pandemic. Policy is being shaped at a rapid rate, and it’s paramount that any changes are made, not just based on data analysis, but also incorporating decisions based on quality research around the feelings and thoughts of people who are directly impacted by these decisions.”

Nick Hartshorne-Evans, CEO & Founder of Pumping Marvellous, said: “During the 1st wave of the pandemic there was a real lack of communication at any level for patients who are suffering from COVID-19 related anxiety around when and how to access healthcare during the pandemic. This is still the case”

“Many patients with chronic conditions such as heart failure have been left in the lurch due to disruption to appointments, delayed access to medications and counselling. The study’s qualitative findings give some very real insights into the lives patients who are suffering from heart failure during the pandemic and the impact on their mental health. We all need to seriously digest this survey and act quickly to prevent deaths that would normally be avoidable.

Read the full report here

The Pumping Marvellous Foundation is recommended 3 urgent course so action following the survey

  1. There must not be a unilateral focus and shift of resources directed exclusively towards COVID, at the expense of other conditions such as heart failure. Cardiovascular services have been highlighted by NHS England as national priorities in the second phase of NHS response to COVID-19, with a specific focus on prioritisation of heart failure service provisions in secondary care.
  2. Cancellation of elective heart failure services is likely to have significant deleterious consequences on heart failure services and patient care.
  3. There must be clear communication with patients (at a local as well as national level) that heart failure services, diagnostic services, A&Es and GP services remain fully accessible for patients with a suspected diagnosis of heart failure as well as those with an existing diagnosis.

Patient insights:

“I have no Community heart nurse, which is very stressful. I have left messages at my doctors for the last month and arrhythmia nurses at hospital but no one has called back which is very worrying especially when I have fluid increase every day which mentally is affecting me that I can’t cope with it anymore and gets me very down.”

“Just feel that heart failure has been left to get on with it . Left hung out to dry . Everyone goes on about cancer, yes it’s bad, but so is trying to live with heart failure during this time.”

“My husband had a CRT-D procedure in January which hasn’t worked. Only 1 wire working. Because of COVID his March appointment became a telephone conversation when he was told they have a window of 1 year to reoperate. His July appointment was cancelled, he now has an appointment for September. If this is cancelled we have bigger problems.”

“Telephone consultation unsatisfactory. Given a 5.5 hour window for the call, and the waiting made me very anxious. Consultant clearly in a rush, and I struggled to keep him on the line to ask my questions. I was allotted a 15-minute appointment, and it was only 7 mins, and would have been much shorter if I hadn’t twice told him I had another question. Perhaps video would be better.”

“As I have just been diagnosed 5 weeks ago I have been very frightened as I feel so alone am scared to exercise need to attend a cardiac rehab and also would like some counselling.”

“Cardiac rehabilitation was cancelled after a couple of sessions & I feel I have lost out on the benefits of it.”

“Lack of support from any of the services in what to do and how to approach the COVID situation. My Doctors don’t seem to understand the condition and the heart team seem hopelessly short staffed to deal with the case load.”

“Feel I’ve been forgotten , just seems take your medicine and hope for the best.”

“Very worrying as I had mitral heart valve repair 11 months ago I went to a covid free hospital last Wednesday to be told my mitral valve is still leaking devastated.  I have never smoked or drunk I have had a very active life half marathons 4 cardio classes a week and now no exercise as I can’t breathe been waiting 10 months for counselling feeling very upset.”

“There has been no care. No follow up. Lack of understanding by NHS of dealing with 3 serious illnesses by yourself in the middle of a pandemic.”

“I don’t understand why heart failure patients are not on  the shielding list.”

“Pacemaker clinic cancelled.”

www.pumpingmarvellous.org offers information and lifestyle advice for those diagnosed and living with Heart Failure including young people and children.

-ENDS-

The anonymous questionnaire survey was disseminated from June 15th 2020 to Aug 10, 2020 to approximately 7000 adult HF patients from England, Scotland, Wales and Northern Ireland.

* 10 UK hospitals (out-patient hospital and community HF clinics). 1050 responses were collected

Notes to editors

The Pumping Marvellous Foundation is the UK’s patient-led heart failure charity. It was founded by a heart failure patient, Nick Hartshorne-Evans, whose experiences whilst rehabilitating has shaped the Foundation’s goals and principles of a patient-centric charity focused on improved patient outcomes. The Pumping Marvellous Foundation runs the largest online conversations in heart failure for patients, distributes patient information to NHS teams. It advocates for improved outcomes partnering with the NHS in England and Scotland along with NICE. The voice of the foundation also regularly reaches out to a global audience.

For more background on Pumping Marvellous and its recent report on late diagnosis of Heart Failure and the effects please read more

For more information or to arrange an interview please contact Keeley Southworth keeleysouthworth@icloud.com or 07511 167 907