Adele Johnson (picture above) was a sporty and sociable 26 year old. Then a car crash triggered a condition that makes her heartbeat accelerate out of control.
It dominated my life.
“I was diagnosed with Long QT Syndrome. That kicked off a long process of loads of different appointments and tests with different people, but no-one really took the time to explain what the condition was all about. I felt so confused and scared - it dominated my life."
Cardiac arrhythmias are consistently among the top 10 reasons for hospital admission with patients suffering both psychological and physical effects. The cost of atrial fibrillation alone accounts for more than one per cent of the entire NHS budget.
The panic that Adele felt whenever her symptoms returned is not uncommon. But with the right care, treatment and support, many people with arrhythmias can get back to living a normal life.
Innovating for excellence
In response to a 2005 extension to the National Service Framework for heart disease, setting out best practice for arrhythmia care, we launched a pilot programme to fund specialist nurses as arrhythmia care co-ordinators (ACCs).
Our independent evaluation of this pilot in 2010 showed that these posts significantly improved patients’ experiences of services. They prevented more than 4,200 readmissions a year during the pilot and cut NHS costs.
What we did
The National Service Framework recommended that patients with long-term conditions should have access to a named ACC to help them manage their illness. Our three-year pilot scheme funded 32 ACCs in 19 NHS trusts across England and Wales. The nurses were recruited into primary, secondary and tertiary centres.
Role and responsibilities
Where pre-existing arrhythmia services existed, ACCs redesigned care pathways to improve integration. Where there was no service, ACCs developed one.
ACCs ran nurse-led clinics, ordered patient tests, developed care pathways, made diagnoses and reviewed medication in conjunction with a consultant. They supported and counselled patients, and educated other healthcare professionals about arrhythmic conditions.
Crucially the nurses also gave out their contact details so that patients could ring with any health worries or problems. Instead of rushing to A&E, patients could turn to their ACC when frightening symptoms returned.
Five vital functions
1. Preventing illness - ACCs diagnose atrial fibrillation, potentially reducing strokes.
2. Monitoring atrial fibrillation - involves planning the patient care pathway and prescribing medication.
3. Managing cardioversion services - ACCs undertake pre and post-procedure clinics, patient assessment and titration of anticoagulation therapy prior to performing direct current cardioversion.
4. Providing patient education and support - for instance, they explain to patients with implantable cardioverter defibrillators what physical activity is safe, what to do when the device fires and give practical advice on travel and insurance.
5. Joining up patient care - ACCs are a specialist resource for GPs, healthcare professionals, patients and carers, helping to ensure a co-ordinated approach to integrated, holistic patient care.
What we achieved
By making services more efficient, and cutting hospital admissions, each ACC makes savings that not only cover their own costs, but recoups an additional £29,357 every year.
With the redesigned services, GPs referred patients straight to a named ACC for a one-stop-shop of assessments, diagnosis and pre-procedure counselling. Post-procedure follow-up was done at a nurse-led clinic after two weeks, rather than months later by a consultant. This allowed consultants to take on more patients.
30 patients interviewed gave an overwhelmingly positive response to the ACC service. Many expressed relief at the continuity that came with a designated ACC who co-ordinated their treatment.
What happened next?
There was a missing link between diagnosis, and being supported to really understand the condition.
I felt like there was a missing link between getting a diagnosis, and being supported to really understand the condition.
Sadly, Adele didn’t have access to an ACC. Instead, she turned to our Helpline for information and support. It wasn’t until one year after diagnosis that she was referred to a specialist consultant.
“He’s great, but I needed someone much earlier to help me understand what was going on and navigate my new world. I felt like there was a missing link between getting a diagnosis, and being supported to really understand the condition.”
Change must come
Too many people with arrhythmia are stranded in a bewildering health system. In Adele’s case, her physical health was looked after, but her quality of life was suffering.
We want to see nurse-led arrhythmia services across the UK, and we’re working with the NHS to try and make it happen.
Tips for success
After the evaluation, BHF supported ACCs to draw up a business case for the NHS to sustain them, which was successful in 31 out of the 32 original posts.
Our current funding model is to provide a package of financial assistance for professional development, access to BHF courses, events and conferences, and access to resources. We now support 56 ACCs (whose salaries and associated costs are paid for by the NHS) across 40 sites.
We submitted data from the ACC evaluation to the National Institute for Health and Clinical Excellence, where it has joined the Quality, Innovation, Productivity and Prevention collection as a "Proven Quality and Productivity Case Study" – a resource to share best practice across the NHS.
For more information please email [email protected]