Getting patients involved

How a new accreditation scheme supports pulmonary rehabilitation services

Thumbnail — Pulmonary Rehab: getting patients involved (Illustration: Carole Verbyst)

In the final part of our series, Neena Garnavos, project manager for PR audit and accreditation programmes, Royal College of Physicians, explains how patients have been involved in developing the programme, and how accreditation improves quality of care for patients attending PR services

The Royal College of Physicians (RCP), in collaboration with the British Thoracic Society (BTS) and the British Lung Foundation (BLF) ran a pilot project to evaluate the feasibility of an accreditation programme for the PR sector. The evaluation concluded there was widespread enthusiasm for an accreditation programme and that the standards were robust and likely to lead to improvements in quality of care for patients attending a PR service involved in the accreditation programme.

Patient involvement

Patients were involved throughout the development of the PRSAS as we felt this was crucial in ensuring that the programme was meeting their needs. Patients were represented on the pilot programme working group via a BLF representative and the standards went out to public consultation. One of the PRSAS standards in particular relates to person-centred care and patient involvement, and the standard around clinical effectiveness is based on the BTS Quality Standards for PR in adults, which were co-produced with patients.

Lay assessors were involved in the pilot assessments, which was invaluable and helped shape the full accreditation programme in the following ways:

Services must send a patient pack to be reviewed by the lay assessors prior to the assessment. This enables the lay assessor to get the patient perspective of being referred to and engaging with that service.
Patient interviews/focus groups are a key part of the assessment agenda.

Since the full programme launched in April 2018, we have continued to focus on patient involvement to guarantee that the programme continues to have patient needs at its core. We will have lay assessors on every assessment (the first of which will take place this month) and will be actively seeking their feedback to continuously improve the accreditation process.

We recently conducted a patient case study and facilitated a patient focus group to look at how we can embed patient involvement in every aspect of the programme and how the programme can support better patient involvement more widely in PR. The focus group identified several potential benefits for services working towards accreditation, shown in the model on the right.

We also know from experience and research in other clinical accreditation programmes, such as JAG Endoscopy, that accreditation can lead to improved quality of care and services, and can address quality issues that are meaningful to patients such as waiting times and equality of access (Siau et al, 2018).

We hope to build on the work of the patient focus group by developing a working group of patients, carers and patient charity representatives to take forward discrete pieces of work aimed at raising awareness of the accreditation programme, supporting services to get involved in the accreditation programme and raising the profile of PR. We are also developing a repository of ‘good public involvement in PR’, so if your services are great at working collaboratively with patients and carers then get in touch and share your secret at pulmrehab@rcplondon.ac.uk

If your services are yet to sign up to the accreditation programme.

Nichola’s story

Nichola shares her experience of recently attending a PR programme delivered by the Adult Cardiorespiratory Enhanced and Responsive Service (ACERS) at Homerton University Hospitals NHS Trust. The service is currently working towards accreditation.

‘Six months ago, I had an exacerbation of my COPD. I felt like a prisoner in my own home and had become a bit of a recluse. A member of the ACERS team came to visit me at home and recommended that I attended the PR class. She explained what this would involve, and how it would help me to manage my COPD. She sent me for an assessment at the hospital where I did some walking tests. Shortly after, I attended my first PR session at a leisure centre near where I live.

I felt anxious about attending the first session.

I would never have gone to a normal gym. I would have felt too self-conscious as my condition makes me cough and splutter. But at the PR group, that didn’t matter because most of the people had COPD like me, and some of them had heart failure. I was around people in the same situation as me and they knew how I felt. This made me feel comfortable to exercise and be around other people. The staff were welcoming and had a bit of a joke with us, and I found the sessions enjoyable. The staff gave guidance on how to complete the exercises and monitored how you got on. This gave me the security I needed to give it a go. At the end of each session there was a group chat where an expert talked to us about different topics relating to COPD. These were very informative and well worth staying for afterwards.

I’m just about to attend my final week of the PR group. Every week I’ve become more confident to get myself to the sessions at the leisure centre, and to get out of the house. I do the exercises at home now in between the sessions. The group have helped me socially by making me feel comfortable to talk about living with a breathing problem, and we share ideas about how to manage the things we find difficult. Everyone has noticed the massive impact the programme has had on me.

I wasn’t aware that the team are working towards becoming an accredited service, but my experience of completing the PR group with them was absolutely brilliant. I hope the programme helps other patients to attend a group as good as this one’.

Implications for practice

Accreditation programmes such as the PRSAS, with evidence based standards and patient involvement embedded at their core, provide physiotherapists with a clear framework for evaluating service provision. This helps teams to highlight areas of good practice and identify how improvements can be made to enhance patient care.

Patient involvement, in developing the PRSAS and as part of the assessment process, ensures patients’ needs are addressed at the heart of the accreditation programme. The process provides opportunities for individuals to develop quality improvement skills and can help to build a continuous improvement culture within an organisation. Although finding time is challenging, this feature has highlighted some practical strategies to overcome this, such as working towards accreditation as a group of services to share the workload and learning, and accessing support from the RCP. Achieving accreditation status provides assurance to patients, referrers and commissioners that a high quality service is being provided.

The patient representative’s perspective

Agnes was a patient panel member for the PR audit programme and attended the PRSAS patient focus group. She has also been involved in improvement projects for PR services and leads a PR maintenance group as a volunteer, with support from physiotherapists.

What is your personal experience of accessing PR services?

I first became aware of PR many years ago through attending a BLF breathe easy group, where the respiratory nurse advised me to see my GP for a referral to my local programme. I didn’t have to wait too long to start the group, but generally I don’t believe it’s very easy to access PR services. Referrals from the hospitals seem to be fine but it can be slow to be referred if you’re at home in the community.

Why do you think it is important to reduce variability in the provision of PR?

PR and physiotherapy are very important to patients with respiratory problems.

If PR was standardised, everyone would be able to access and follow the same programme. That would benefit the patient because every person would receive a high standard of support. For this to happen everyone needs to work together, especially the physiotherapists delivering the service.

What are your views on the PR accreditation programme?

The accreditation programme will improve standards for the patient. It will make sure that everyone is singing from the same hymn sheet. One of the standards means that PR services and commissioners have to show how patients will be supported after their last PR session, which is very important for patients. Maintenance programmes, like the one that I lead, would therefore be supported as part of services taking part in the accreditation programme. Physios want this support to be available too, but lack of funding is often the main problem. Maintenance groups help to reduce the need for hospital treatment which saves money in the long run. Physio might come to an end, but our group are still here helping each other.

Why should PR services sign up to the programme?

Because it’s important to patients and will improve their treatment. It will help physiotherapists to provide a high quality service – this is what everyone wants, but not all patients are getting this at the moment. It’s good for the physiotherapy departments too because it supports them to make their services better. It’s worth them investing their time in to become accredited.

PR is important to me, my maintenance group and to physiotherapy departments. It has helped us to learn to live with our respiratory conditions and, with ongoing help from physiotherapy, we are fighting to maintain this. The accreditation programme will help others to do the same.

01 October 2019

01 Oct 2019