A multidisciplinary programme is providing dedicated support for patients and their families following the trauma of a critical illness.

The InS:PIRE (Intensive Care Syndrome: Promoting Independence and Return to Employment) programme is delivered to patients who have been in intensive care but who have recovered and are well enough to go home.

Dr Lucy Hogg, NHS Fife Consultant in Intensive Care Medicine, said: “Patients who come to intensive care have life-threatening critical illness. Part of the therapy to stabilise and support them can involve a number of invasive procedures, which may be uncomfortable or prolonged.

“For patients who are less than clear about where they are it can be a distressing and emotionally difficult time. The medications that are used to keep patients calm and comfortable can also mean that their perception is distorted and they have a patchy recollection of events, making it difficult for them to make sense of what has happened.

“The InS:PIRE programme seeks to enable and empower patients and their families to manage their rehabilitation from a physical, emotional and psychological perspective.”

Patients are contacted between six and 12 weeks after their discharge, and are invited to attend the five-week programme over consecutive weeks with a family member or carer. The programme consists of:

  • A 1:1 session between the patient and clinical staff involved in their care
  • Pharmacist support providing further explanation around medications
  • Physiotherapist support, including a group exercise class to assist with rehabilitation
  • Clinical psychology group intervention for patients and carers, helping people to discuss the difficult feelings and emotions they have experienced
  • Peer support and cafe – providing an opportunity to speak to volunteers and other members of the group who have also experienced intensive care as a patient or family member

On completion of the programme patients are signposted to services in their community providing further support.

Grant Fenton (26), from Glenrothes, is just one of the patients who has been supported by InS:PIRE.

In February 2018, Grant was diagnosed with sepsis, resulting in the loss of his right leg and kidney failure.

He said: “I was in intensive care for three weeks and in hospital for almost three months altogether. I clearly remember the hallucinations and delirium, which tricked my brain into thinking I was somewhere else.

“The hallucinations affected for me for a long time. I often had nightmares and panicked remembering everything that had happened.

 “At first I wasn’t too sure about InS:PIRE, I was out of hospital and wanted to stay out, but my mum persuaded me to go and I’m glad I did.

 “InS:PIRE was absolutely amazing, and I can’t praise it highly enough.

“The first day I went I met staff who had looked after me and that was so helpful. I clicked instantly with other patients who had been in intensive care and was able to talk about what happened and they were able to share their stories too.

“I realised I was only at the beginning of my journey. I was terrified of the future but life is good now – I feel like I have a purpose and have turned negativity into positivity.”

As well as supporting Grant, the programme was also there for his loved ones, including his mother Aileen.

She said: “We thought InS:PIRE would be really good for Grant, it seemed a very positive programme.

“Flashbacks and trauma were building up and he was struggling to deal with what had happened. He couldn’t talk about it and couldn’t break the cycle.

“We attended the programme with him. As a family it supported us to support him.

“InS:PIRE was such a help to us, having coming through the experience we’re in a much more positive place.”

Dr Chris McKenna, NHS Fife Medical Director, said: “Intensive care can be very disorienting for patients. As they recover, not only do patients have to deal with the physical changes which may be the result of a critical illness, there are also a huge range of emotions to process.

“In addition their loved ones have been through a very worrying and anxious time.

“InS:PIRE allows patients and their families to understand and process their experience, and to manage their recovery effectively going forward.”