Rehab pioneer: leading the change

Professor Sally Singh has a talent for disruption. As a physiotherapist who went on to gain a PhD, she didn’t quite fit in the clinical or academic system anymore.

‘When I got my PhD 30 years or so ago, the physio department didn’t know what to do with me and I think even now this concept of a clinical academic is still developing.’

She was fortunate enough to have a great mentor who supported her through a transition into academia. Sally now holds dual roles as both professor of pulmonary and cardiac rehabilitation at the University of Leicester and head of the same specialism at the sister trust, while also being clinical lead for the pulmonary rehab arm of the national respiratory audit programme.  

But when she started out pulmonary rehab was virtually unheard of. 

‘In about 1994, I visited the only centre delivering any form of rehabilitation, in Scotland, and even then, it was for research only,’ she says.

‘And so, with the support of the hospital managers we set up this multidisciplinary team with a patient on the panel to deliver pulmonary rehabilitation.’  

Now she is challenging the status quo with a new approach to treating people with multiple long-term conditions. 

She is running a trial called Perform, which is taking place at 20 sites across the UK. The National Institute for Health and Care Research (NIHR) funded trial focuses on exercise-based rehabilitation and health and wellbeing activities to improve individuals’ quality of life and reduce avoidable hospital admissions. 

Departing from the usual condition-specific approach, it is open to people with two or more long-term conditions.  

Participants receive person-centred counselling, a cycle of realistic action-planning and a mapping of how self-care behaviours affect their physical and mental wellbeing. 

Physiotherapists lead the programmes, along with other health professionals, addressing a number of key symptoms common to long-term conditions such as sleeping and anxiety, pain management, staying active, breathing control and medicines management. Delivery is overseen by a behavioural psychologist. 

‘These are very interactive sessions that encourage people to go away and think about how they may adapt their behaviour and then that’s reviewed at the next session,’ Sally explains. 

In addition, there are maintenance checks between the 16 sessions, and family and friends are encouraged to support participants to complete the course. 

Based on evidence of exercise’s impact on a wide range of conditions from dementia to Long Covid, this generalist offer has the potential to close many gaps in access to rehabilitation.  

Results will be compared with outcomes from single-condition programmes and if Perform can match or exceed them, we may see the launch of one overarching rehabilitation programme based around exercise that accommodates all long-term conditions.

A broad approach

Sally admits that some may find the Perform approach challenging. 

‘This new trial is quite disruptive because in terms of service delivery, we are currently very siloed,’ she says.

‘We have single-index condition services, and we pride ourselves on being specialists in a particular area. That, of course, reflects some of the population. However, we have a growing problem of people with multiple long-term conditions and a complex symptom burden for which we have no services, no commissioning guidance, no national imperatives and so on.  

‘Of course, everyone would say that they see people with long-term conditions, but they don’t usually address the challenges [outside their specialisms] that come with accumulating long-term conditions. If a person sees a physiotherapist for their knee pain but also has COPD, I can absolutely guarantee that the physio will not ask them to demonstrate an inhaler technique. 

You can’t just pick off the symptoms you want to address – that way people with other important long-term conditions are denied access to a valuable intervention.

A three-site feasibility study last year produced promising results, with positive feedback from both participants and NHS colleagues. 

Physiotherapists, who already focus on a broad approach to managing complexity, have proven particularly well-placed to build their individual portfolio of broader skills and capabilities in order to more effectively manage people with multiple long-term conditions. 

One of the learning points will be to develop a training package to support physiotherapy workers and others to manage complex patients, as part of the trial.  

The rising burden of multi-morbidity

Perform’s bid to fill the gap in rehabilitation provision for those with multiple long-term conditions won £2.5 million in NIHR funding, and with that national recognition that this is an area in need of urgent action. 

The population with two or more long-term conditions is set to rise from the current 43 per cent to two-thirds of the population by 2035. 

This accounts for 70 per cent of today’s health spending – addressing it has rocketed to the top of the government agenda. 

‘There is an increasing recognition that with an ageing population, the burden of multi-morbidity will increase,’ says Sally. 

‘There is also a huge health inequality in that a more deprived population becomes multi-morbid at an earlier stage than a less deprived population.’ 

Bearing in mind the scale of the problem, Perform had to be applicable in all parts of the country. This drove Sally’s team to recruit a wide-range of sites for their 20-centre trial, which reports its initial findings in September. 

‘We have community care, primary care, secondary care or secondary care doing outreach into the community and social enterprise groups,’ she says.

‘It’s a real mix with an eye to that implementation. Because it’s been trialled in all services you get that translation into service provision as quickly as possible.’ 

Sally believes Perform has the potential to help economic growth too, as people of working age with a long-term condition are twice as likely to not have a job than those who don’t. She admits to being surprised by how many participants on the feasibility study leading up to the trial were of working age.  

‘They were younger than we conventionally see in pulmonary and cardiac rehab. With rising levels of poor mental health, you only have to add in one other condition, such as arthritis, then you have an element of getting people into employment or being more productive when they are in employment. So, we’ve added in a scale to look at work productivity.’ 

The use of a wide range of outcome measures including the EQ5D in the trial will give clear information about the impact of these interventions on patient outcome and experience.  

New opportunities are emerging in this move away from specialisms. NHS England has published credentials for a community-based rehabilitation advanced practice role for people with long-term conditions. The CSP is pushing for more of these roles, with training courses leading into them.  

Sally agrees: ‘There are roles as both specialists in certain areas, and a specialist generalist. 

‘The kind of role you need in the Perform trial is one that’s been exposed to a lot [of conditions] and has very well-defined assessment skills.’ 

Better care for patients is the ultimate prize, she reminds us. 

George’s experience 

George, a retired lorry driver, completed a seven-week programme last year, concluding: ‘It was really helpful in ways I didn’t imagine it would be.’ 

The 65-year old had been diagnosed with chronic kidney disease (CKD) just before retirement, later developing type 2 diabetes and painful osteoarthritis in both knees.   

He was increasingly struggling with fatigue and shortness of breath, resulting in multiple GP visits to search for a solution to the burden of symptoms, and a couple of visits to A&E. 

By the time his renal team at the hospital enrolled George on Performs feasibility trial, he was rarely taking walks with his wife and had all but given up his lifelong hobby of gardening. Feeling anxious and frustrated, George readily accepted a spot. 

As well as attending supervised exercise sessions at a centre over seven weeks, George had health and well-being sessions to help him and his wife with effective disease self-management.  He was also prescribed exercises to complete at home. 

At the end of the seven weeks, and two extra sessions to support the transition to independent healthy lifestyle behaviours, George had improved his walking performance on the incremental shuttle walking test by 50 metres.  

He reported reduced symptoms including relating to his breathlessness and pain. 

He said: ‘The staff were excellent at supporting me through the programme. I can now go for a walk with my family, and I feel much more in control of my symptoms, which by the way are a lot better.’ Visit The Perform Trial.