interviews

Bringing the family back into patient care

Raj Jain, chief executive of Liverpool Heart and Chest Hospital, spoke to NHE about recognising the clinical importance of involving friends and family in care.

The UK’s first Patient and Family Care conference, held in Liverpool, addressed a new way of delivering care that while intuitive, is often completely ignored by the NHS. Over 120 nurses, consultants, commissioners and providers heard about the benefits and challenges of the approach and its relevance to the ‘6 Cs’ of nursing, which sit at the heart of the Department of Health’s nursing strategy, ‘Compassion in Practice’, launched in 2012.

Liverpool Heart and Chest Hospital (LHCH) chief executive Raj Jain spoke at the event, explaining how the model could be used at other trusts across the country.

He told NHE afterwards: “The ambition behind the conference was a call to action for moving our care model from patient-centric to a patient and family-centric care model.”

The reaction to the conference was very positive – LHCH was “bowled over by the positive comments that were made about the concepts and the practical application that we’re putting across”, Jain said.

The right thing to do

Jain added: “This is the right thing to do, it is really good for the very challenging times we find ourselves in, and yes it’s something that staff can be really inspired by.”

The PFCC (patient and family centred care) approach differs from the traditional by involving family in supporting care “as and when” both the patient and family want to be involved.

Action can range from a spouse holding a confused patient’s hand to comfort and calm them, to a sibling learning how to provide basic care from home following admission from hospital.

It addresses a jarring inconsistency that patients are seldom solely responsible for their own care once they leave the NHS. And as well as being more easily accepted by patients, it can save money and boost productivity.

Jain said: “[In] traditional discharge processes in most hospitals, often the person who is actually managing that drug regime is the spouse, but we don’t involve the spouse in the description of care.

“Whoever the patient says supports their medication, we now involve in the discharge arrangements in a much more meaningful way. We get much more compliance with the drug regime, which has led to lower readmissions.”

Individual support

The PFCC model of care has been “hard-wired” into the hospital, with rooms designated for relatives staying overnight and who the patient nominates, with the aspects of care they would like to be involved in, identified during the initial assessment for admission.

The level of care family members are prepared to be involved in differs from individual to individual as the family are supported to provide this care and become real core members of the care team.

PFCC has led to reductions in falls, better nutrition and fluid balance, and more content patients.

Jain told us: “What we expect to see in the future – we don’t have big enough samples to say this is absolutely right yet – is a reduced length of stay and reduced readmissions.

“Through our PROMs (patient recorded outcome measures) work, we expect to see improvements in return to normal living, in wellbeing.

“What happens in your inpatient stay, the literature shows, has a significant influence on how well you return to normal living.”

One big issue for PFCC is around data confidentiality. Jain said: “Having a PFCC ward – the patient confidentiality issues looms large in that, doing all that preparation, getting staff to help, talking them through the preparations you have to put in place to make sure you’re not breaching patients’ confidentiality.”

Families aren’t visitors

It has been “a real mind-shift” for staff at LHCH, who initially responded to the scheme with “significant resistance”.

This stemmed from staff regarding patients’ relatives as disruptive and as an inconvenience, rather than a source of help.

Jain said: “We coined the phrase, ‘the families aren’t visitors’, to get across the point that we should be standing on the outside, supporting the patient and their family rather than seeing the family as visitors and intruders.”

This can “absolutely” overlap with the work of healthcare assistants (HCAs), although this it not the ambition of the programme. There has been no reduction in staff numbers as a result of PFCC, but it has helped to release extra time for care.

“No hospital is staffed to its ideal,” Jain said. “What we’ve seen is what we call ‘emotional mapping’ with patients, gauging their emotional state. We’ve seen really significant reductions in their levels of anxiety – anxiety is related to recovery.”

He added: “It’s not for everybody, but it’s working in 90% of cases.”

For patients without willing or present family, volunteers can provide a similar role. This role is mostly performed by ex-patients who can offer peer-to-peer support. Jain said: “That’s really powerful. It’s a surrogate family member in essence.”

Jain described structured training programmes to improve competency in the new approach, but said it would never be like reading an instruction manual. “It is about attitude and cultural shift – making sure that the barriers to being family-centric are assessed properly, and staff feel as though they have the permission to change things around the needs of the family.”

PFCC and the 6 Cs

The 6 Cs of nursing (see here for more) link in directly with this approach. While PFCC has been prevalent in children’s services, advancing and extending this model to other patients could allow the NHS to ensure patient safety and continue to improve their experience with a sense of compassion.

Jain said: “Excluding the patients’ family is not a compassionate act; that is done for our benefit. Taking the whole of the patient into the care discussion, their family and friends and circumstances, absolutely is compassionate care.

“Our nursing staff having the courage to advance this is really challenging mindsets. Having families on intensive care wards is an enormously complex area; mortality is higher in intensive care units.

“Staff have to change the way they communicate with the families and it takes time, effort and courage, because they’re having to be more transparent in a way that they haven’t been trained or socialised into.”

This may challenge the mindset of Western medicine, which tends to value professional decision-making over family-centric models of care.

The foothills of potential

These challenges will be similar across different trusts, and Jain emphasised how it could be implemented throughout the NHS.

“We’re talking about the care model, not ‘the care model in a specialist trust’, or ‘the care model in cardiac care’. This model is entirely transferable, from inpatient to community services.”

LHCH has translated PFCC in its community services and are working with commissioners to see how primary care could be supported to adopt the model.

Jain added: “It’s just the right thing to do. Most of us have family and friends who we feel we want to be involved in some of the most difficult points of our life, and yet [the NHS] seeks to routinely exclude them. It’s almost incredible.

“We don’t say ‘how do you empower patients and families’, we talk about how we stop ourselves disempowering them in the first place. Using those words reminds us of the shift that has to happen.”

LHCH has been developing the model for 12 months and is “only at the foothills of what we could achieve”. Jain explained: “It takes time. This is a long-term commitment; it’s entirely about cultural change. We could demonstrate the consistency with the 6 Cs, and we could demonstrate how it would answer a lot of the Francis recommendations.”

The conference will return next year, around April 2014.