Patient-led initiative targets heart failure in primary healthcare

A partnership between Greater Manchester Health and Social Care Partnership and charity Pumping Marvellous Foundation is aiming to increase awareness of heart failure

Marvellous Mentors, a partnership between Greater Manchester Health and Social Care Partnership and charity Pumping Marvellous Foundation is aiming to increase awareness of heart failure

Some items from the Marvellous Mentors programme pack 

Marvellous Mentors – a collaboration between devolved healthcare provider Greater Manchester Health and Social Care Partnership (GMHSCP) and the UK’s only heart failure patient support charity, Pumping Marvellous Foundation – is a patient-led educational programme that aims to improve heart failure diagnosis and treatment in Greater Manchester.

Heart failure is a complex clinical syndrome of symptoms such as breathlessness, extreme fatigue and fluid retention that can indicate the efficiency of the heart is impaired. Around 920,000 people have a diagnosis of heart failure in the UK.

In Greater Manchester, cardiovascular disease (CVD) is particularly prevalent. The area has one of the UK’s highest rates for premature death from CVD in people under 75. The partnership is aiming to prevent 600 deaths from CVD in the locality by 2021.


number of people living with a diagnosis of heart failure in the UK

(Source: National Institute for Health and Care Excellence)

The Marvellous Mentors programme was developed after Pumping Marvellous Foundation’s annual specialist nurse audit highlighted variations in heart failure service provisions across Greater Manchester. The Marvellous Mentors are the patients involved via the charity, and the nurses and GPs that have attended one of the three launchpad events to receive heart failure educational training and resource packs.

Service provision

'There was a lot of inequity across the whole of Greater Manchester in service provision,' says GMHSCP lead nurse for primary and community care Louise Brady.

'We have ten clinical commissioning groups (CCGs) across our locality and, for an average CCG, you are looking at a population of 235,000,' says Ms Brady.

'In partnership with the charity, we have been able to look at access to natriuretic peptide testing – the diagnostic blood test for heart failure recommended in the National Institute for Health and Care Excellence guidelines.

'We found there were at least two CCGs that did not have access to the testing, and we have been able to put it in place so that this testing is available across Greater Manchester.

'We have also identified gaps in service provision. For example, in central Manchester, there were no specialist heart failure nurses and the team was depleted. Since the programme launched, we have been able to get nurses back into posts.'


In community locations in Manchester, Stockport and Bolton, three Marvellous Mentors launchpad events took place in October and November 2018. The sessions were put together by the charity for practice nurses, district nurses, community matrons and GPs to increase awareness of heart failure in primary care.

The sessions looked at how the condition is often misdiagnosed in primary care as symptoms are similar to other conditions such as chronic obstructive pulmonary disease (COPD).

7 million

people living with heart and circulatory diseases in the UK

(Source: British Heart Foundation)

One of the important messages that healthcare professionals took away from the sessions was to keep heart failure in mind when considering the bigger picture of a patient’s symptoms and their history. Healthcare professionals were also urged to use natriuretic peptide blood testing more to assist with earlier diagnosis.

As part of the programme, the charity has worked together with GMHSCP to produce a toolkit for primary care which includes resources such as a Marvellous Mentors symptom checker. These toolkits were provided to healthcare professionals at the events.

Pennine Care NHS Foundation Trust community nurse Reanne White, who attended the Bolton launchpad event, says: 'I see many patients with heart failure in my day-to-day work who are often later in their disease journey.

'Attending the session has been extremely valuable as I now have a better understanding of how to recognise the signs of heart failure, leading to faster diagnoses with the potential to save lives.

'Having training delivered by patients as well as specialists is the way forward in educating the clinical community.' 

Patient viewpoint: 'I was fobbed off'

'I had been ill for some time with a bad viral infection and I must have seen ten different GPs, and not one of them recognised the symptoms,' says Sarah Worsnop.

Ms Worsnop was 42 when she was diagnosed with heart failure and shared her story at the launchpad events as a member of the patient panel.

'This was despite the fact I have type 1 diabetes and there is a history of heart problems in my family. My ankles were swollen, I was breathless, I could not lie flat in bed and I felt constantly tired, but I was fobbed off.

'I was told it was possibly a chest infection or lupus and I was sent to different clinics. In the end, I saw a trainee GP who listened to my heart and said I have a murmur. I had never had one before so she referred me to cardiology. In the time between seeing that GP and having my first cardiology appointment, I had a second viral infection and went into severe heart failure.

'I have an internal defibrillator fitted and I am stable now. I want to use my experience to avoid this happening to others.'


Shared appointments

Over the three events, more than 120 healthcare professionals heard from a range of experts including two senior cardiologists from Manchester Royal Infirmary, Pumping Marvellous Foundation’s heart failure specialist nurse and from patients themselves. During the sessions, Ms Brady spoke about the introduction of shared medical appointments.

Group consultation training for the consultant cardiologists, nurses and expert patients is already underway. A trial of group consultations with the heart failure service at Manchester Royal Infirmary will follow.

'Our aim is to reduce the amount of outpatient clinic appointments for routine follow-up care for heart failure patients in Greater Manchester,' says Ms Brady.

'We will have consultant cardiologists leading group consultations in primary care and outpatients with specialist nurses, primary care nurses and patients involved. We are hoping that we can take down some of the waiting times for patients and bring that care closer to home.'


Identifying heart failure in primary care

'The older the patient is, the more likely they are to have heart failure,' says Pumping Marvellous Foundation heart failure specialist nurse and clinical lead Angela Graves.

Angela Graves

'However, heart failure can affect any generation. A patient could be in their twenties, thirties or forties when they are diagnosed.'

Early warning signs

  • Breathlessness: is the patient breathless or do they complain of having breathing difficulties during the night? An inability to lie flat in bed is another common symptom with heart failure patients
  • Fluid retention: does the patient have any signs of swelling of their legs, ankles and feet?
  • Fatigue: patients may feel unable to do what they usually do, such as walking upstairs or they may feel breathless when they have a shower

'If these symptoms are new or have recently started, consider that it could be heart failure and do the blood test,' advises Ms Graves.

'As part of a blood pressure check, put your hand on the patient’s wrist to assess whether they have an arrhythmia problem. An underlying rhythm problem can be linked with heart failure.'

Unusual causes can include excessive alcohol intake and viral infections. Patients are also at increased risk if they have diabetes.

'National Institute for Health and Care Excellence guidance states that every patient should have a multidisciplinary heart failure specialist team that works with primary care in the correct management of patients,' adds Ms Graves.

'Integration between the specialist team and primary care is so important.'


Further information

Related articles

This article is for subscribers only