For many years, the importance of involving patients in service evaluation and planning has been a gold standard to commissioning cycles and service planning, and the necessity of shared decision-making has underpinned positive healthcare practice. However, the involvement of patients as equal partners in service delivery itself is a lesser-known concept. 

At ‘Raising the bar’ delegates heard that we must not only think differently, but work differently, in order to meet the changing needs of healthcare – and that a crucial way of working differently involves patients in service delivery at an integral level.

We need to change how we access services…

Martin Fischer and Sue Thomas, in discussing whether we can improve on the current hub and spoke model of access to MS services, were clear that we need to change how we work – how we respond to disease, how we solve problems and how we form successful networks, or ‘nets that work’, as Martin emphasised. 

With over 80% of people in hospital being admitted with more than 5 comorbidities, the way we view patients and respond to their needs must change, Martin noted. Examining the data and looking at our current systems, Sue shared that rather than a hub-and-spoke model, we ought to be aiming for efficient networks. Martin added that we often view networks as soft, woolly things, but that in reality,

a network is formed on connections and personal integrity, based on reciprocity where your reputation is the currency, thus inescapably driving up quality through its very essence.

‘60% of all NHS expenditure is waste. The biggest resource is the patients themselves – we need to rethink who does what, where, and have a different way of organising our services,’ said Martin. He continued by explaining that

people with MS need to be partners in service delivery, that we need to let go of a lot of things that no longer serve us, and to use technology to enhance relationships but not replace them.

And how we deliver them…

CEO of Altogether Better, Alyson McGregor, summed up the challenge well when she said,

‘we need to agree a new purpose – for clinicians only to decide won’t cut it, we need to work together, in real collaboration.’

Presenting brilliant and tangible examples of just how valuable a new way of thinking and working can be, both for healthcare practice and for patient’s own wellbeing, her talk was both inspiring and practical. The importance of valuing people’s lifestyle and wellness practices is becoming more and more well-researched, and Altogether Better has found a way to combine partnering patients in delivering improved and unique solutions to healthcare needs whilst also meeting fundamental human requirements to have purpose, value and community at an individual and collective level

Alyson, presenting a range of examples from around the country, made a compelling case for doing things differently and highlighted that we must do things together, where everyone is part of both the decision-making and the active doing. Altogether Better provides a model that is neither volunteer, nor staff-based, but one of collaborative practice, where everyone involved, whether paid or unpaid, is respected and valued for the gifts they bring to their community.

Often, Alyson explained, people who are not coping or adapting to their health challenges or life changes are not in need of a medical professional, but do not know where else to turn.

‘In one area, one single person had come to the GP surgery 148 times in one year. That is a person whose needs were clearly not being met’, she said.

Giving a variety of examples from a GP surgery which purchased an allotment which a community of people then stepped forward to run, fund and work on, to individuals offering lifts to district nurses to help them see more patients and spend better quality time with each, Alyson explained that people are invited to come and share their gifts without being directed as to what that gift should be. 

The needs of the community or area are identified through looking at data, language and purpose of services, and then healthcare professionals and local citizens are invited to share what they can offer or bring to help meet these purposes or address the needs. Alyson noted that sometimes language can get in the way. ‘Follow-up appointment’ has very little meaning to most people, and what is the purpose of an appointment for any given person? ‘We can change our language to change what we do’, she explained. She also noted that bringing different people into a team or workplace changes the culture and how the service works. ‘If you change who is in your team, you change what your team is about.’

An example of how this looked in practice for one GP surgery: 

The challenge: ‘In one GP surgery, 40-50% of people were presenting with a non clinical need – depression, lifestyle, weight gain, minor ailments, loneliness – so much of what happens in health is social.’ 

The intervention: ‘People call in and say what their need is, and they can have it met in a variety of ways. [Doing this has] increased the list size too, but it’s not always GP appointments – GPs have time to see trickier, clinical cases and can have time to discuss these together, whilst other people can meet the needs of those who call in but don’t necessarily have a medical need.’

(listen to the practice manager discuss the changes in the surgery)

Alyson shared that this form of collaboration creates community and breaks down barriers across healthcare professionals and patients. ‘Joining in, giving of themselves, lets them be part of the solution. To give and serve others in their needs gives people purpose, community, belonging, friendship, a role, an opportunity…’ 

Is this relevant specifically for MS?

In response to a poll during Alyson’s talk,

54% of attendees said that 25-50% of the patients they saw did not need clinical support,

highlighting that there is definite scope for this form of working differently in neurology practice specifically.  Alyson also noted that real life for people with a neurological condition is around 8,000 hours on their own or with their GP for every 1 hour spent with a specialist neurologist, and so engaging more with primary care is essential for supporting people with a neurological condition as much as for any other patient. 

Whilst she was clear that there are health spaces, especially acute care, where this form of service change does not work well, this tends to be in those spaces where formal systems and strategic, transactional work is essential such as the emergency room or the operating theatre. However, there are acute spaces where collaborative practice can work. For example, in a hospital which had a real problem with people dying of dehydration on the wards, a ‘more than a lemon’ campaign was launched where patient champions went around the wards with nice glasses, ice and lemon and offered a ‘cocktail’ alongside some company and a chat. Dehydration was no longer a problem and patient satisfaction levels rose significantly. 

Recognising your resources

Whether in a community or hospital setting, there is an opportunity to work differently by truely recognising all of the resource available to you – whether that is through your patient population or by using the strengths of everyone in your team and realising that they all bring something different. The clear message was to see all the resource in your team – from the consultants to the cleaning staff – because they all have something to offer. Professor Gabriele de Luca spoke similarly of recognising everyone in your team when discussing leadership on the second day of the event, whilst Jerry Clough noted collaboration is essential to achieving change at a real level. Researcher and writer Johann Hari cites an example in his latest book ‘Lost Connections: uncovering the real causes of depression – and the unexpected solutions’,  where NHS cleaning staff were told they were not meant to have conversations with those in the wards where they were cleaning. Staff job satisfaction and patient’s perception of their care both went down. 

Debates around people’s cognitive ability and individual preferences to self-refer or choose their own follow-up appointments were extensive. Ultimately agreeing that patients should be able to choose how and when they are seen, and with choice between routine and ‘as-needed’ appointments, it was also clear that an individual’s abilities and capacity need considering as well as their preferences. For example, risk-stratifying patients who may need prompting, who have cognitive impairment, or who are unlikely to choose to access services directly, is as much a means of tailoring services to individual needs as discussing personal preferences. 

In summary, Alyson was emphatic.‘People don’t want to be helped, they want to serve, to be part of the solution. This way of working is not about volunteering – it’s about inviting people to deliver things differently. It’s not social prescribing although it does all the things that social prescribing does –

it’s about changing organisations, change from inside in a gradual way.’

More information

  

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