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Leading change for SCI patients



Through the tireless dedication of Carol Adcock, a specialist nurse at the Spinal Injuries Association, change is taking effect in frontline healthcare to help improve – and even save – the lives of SCI patients. NR Times meets selfless Carol, winner of the NR Times Above and Beyond Award 2023, sponsored by BIS Services, to learn more about her work.

From her 28 years spent in frontline nursing, supporting patients with spinal cord injuries and their families through the many challenges they face, Carol Adcock realised she wanted to develop services that would positively impact their lives. 

“For those who could access the services at specialist spinal centres, that was great – but for those who couldn’t, and for those who weren’t getting the help, it used to keep me awake at night,” says Carol. 

“A lot of people working in the NHS see people’s names on paper, but for me and other nurses working on the frontline, we get to know them and their families really well. I wanted to develop something that would genuinely help to make positive change for them.” 

And from that commitment has come significant progress, with Carol campaigning for change and instigating groundbreaking initiatives that have had hugely positive impact – the scope of which only continues to grow. 

In her role as specialist nurse lead at the Spinal Injuries Association, Carol has led on the development of training and awareness initiatives in bowel care for nurses in hospitals across the country, to help SCI patients in their care receive the support they so badly need. 

She is also spearheading the SIA’s #SeriousSh1t campaign to tackle the issue of poor bowel care, which has been acknowledged in Parliament. 

Carol was also instrumental in the creation of Emergency Care Plans for spinal patients – a clinical record of all an SCI patient’s needs. In the event they are admitted to hospital in an emergency, the medical team can instantly access this potentially life-saving information. 

Her dedication to making change and supporting the SCI community saw Carol awarded the Above and Beyond Award in the inaugural NR Times Awards – although for Carol, she is ‘just doing her job’. 

“You get so much job satisfaction from doing this type of nursing, it’s amazing. You do it for the people,” she says. 

“If I wasn’t leaving work every day thinking ‘I’ve done a good job today’, then I wouldn’t be doing it and I shouldn’t be doing it. I’m so lucky to have a career in something I absolutely love doing.

“I’m really pleased with what we’ve achieved so far, but we definitely won’t be stopping.”

Pioneering change in bowel care

Having spent almost three decades in roles within the North West Regional Spinal Injuries Centre, spanning acute care, rehabilitation and community care provision, Carol saw first-hand every day the challenges SCI patients face. 

Her change-making approach began during her time at the centre, when she played a central role in the concept and development of the outreach service, which significantly reduced the waiting times of newly-injured patients needing admission. 

But having joined the SIA, an organisation known for its commitment to fighting for the SCI community, Carol’s immediate priority was to confront the issue of bowel care – something which for too long has been neglected in its importance in mainstream healthcare. 

“For people with SCI, everything pivots around bowel care. If that’s not right, it doesn’t matter what anyone else does or what other support you’re getting. If you’re incontinent, you can’t do anything, you won’t want to leave the house,” says Carol. 

“The greatest impact we can have on a patient’s life is getting that right for them. It’s a simple but fundamental care need. I have always spent a lot of time with people to get that sorted for them – but outside of the specialist spinal centres, nurses aren’t trained in specialist bowel care, so very often this doesn’t happen.

“Too often, we’re seeing people who are living at home with SCI and they manage bowel care themselves, they might be doubly incontinent but with the interventions, they don’t even need to wear pads. But then they go into a hospital where the nurses unfortunately don’t have the skills, they’re placed in a pad and are left to soil themselves. It’s very sad and not acceptable.”

Identifying this problem, Carol and her team devised a solution in the way of an education programme for nurses, to support them with their learning and development around bowel care – something they are not routinely trained in. 

Since 2017 it has been embraced by 52 hospital trusts.

“These are very specialist skills which nurses do really want to learn. So we’ve devised this programme to give them the skills, which is positive for the standards of proficiency for nurses, and especially positive for their patients,” says Carol. 

“That has been a big step forward. But what we really want to achieve now is for the policymakers to influence this, to recognise how vital this is to SCI patients.” 

And alongside the education, a policy on bowel care has also been written by the SIA for use in hospitals nationally – although a Freedom of Information request revealed that many still do not have a policy in place, or else have one that is not fit for purpose. 

“We actually wrote a policy, because we want it to be adopted and implemented. If we leave it to individual hospitals, it will become the job of an individual nurse who won’t have a clue where to start,” says Carol. 

“It’s now being used nationally, which is great, but we know there are still hospitals that aren’t using it. There are others who say that specialist bowel interventions can be done, but only under general anaesthetic. While that is right for an elderly person who has become grossly constipated, it is absolutely not for someone who needs it doing every morning, or three times a week. 

“Or they might have one nurse who does it, but she only works Monday to Friday, nine to five. So you can’t have your bowel care needs met outside of those hours. That’s not workable.”

The SIA’s campaign, #SeriousSh1t, has been a high-profile way of challenging this, with the launch being held in the House of Parliament, bringing MPs from across the parties together to understand more about the need to have a fully-implemented bowel care policy in place. 

Carol is a key figure in the campaign, and while acknowledging its progress, highlights that there is still a lot of change that still must happen. 

“It’s great that we are being credited with influencing nursing proficiency, but the ambition is for every nurse to be a driver for change in their own hospital, on their own ward, and for those in positions of influence to recognise and make change,” says Carol. 

Enabling life-saving hospital care

Identifying another challenge SCI patients faced through her experience of supporting families, Carol wanted to change the reality for those who are admitted to hospital where staff have no knowledge of their emergency care needs. 

Factors including bladder, bowel, skin and respiration management, as well as autonomic dysreflexia, can often not be recognised by medical teams who are new to a patient – and can put a person’s health, and even in some situations, their lives in danger if not given the specialist interventions they need. 

To tackle this, Carol has helped lead the creation of the Emergency Care Plan, which informs the clinical treating team about the patient’s specific needs as a result of their SCI, enabling them to stay safe and well. 

The origins of this groundbreaking, and indeed life-saving, intervention lies again in Carol’s time in frontline nursing, when – ever the change-maker – she introduced an emergency card for people at risk of autonomic dysreflexia. 

“I wanted all of our patients to have one when they were discharged, and the Consultant in the unit where I worked actually paid for them to be printed with his own money,” says Carol. 

“It was then adopted by SIA Merseyside, and went from a single card to a concertina-style card, which is still handed out and is used nationally. So that was a positive step – but when I got to the SIA, I definitely wanted to take that further.”

Working with her SCI nurse colleague Debbie Green, the concept of the pre-admission Emergency Care Plan was born. 

“Before this was created, when people were going into hospital, part of our job was to travel to wherever they were in the country and tell the nurses how to best care for them. But it was very reactive, and without proactive action, people with SCI can quickly become unwell,” says Carol. 

“I worked with a lady who was going into hospital and she’d had such a bad experience last time, it was awful for her. We realised we needed to do something about it, to stop people going through this. 

“So the idea of the Emergency Care Plan became obvious, so we can proactively let the hospital know what their needs are, and we can put it together before they go into hospital, so it’s ready for if and when they do.”

Carol now supports people to put their plans together, assigning an afternoon a week to creating a comprehensive list of their needs, which can then be added to their digital medical records. 

“We’ve heard some really positive stories about when people go into hospital and they have this care plan, it made a difference to them,” says Carol. 

“Suddenly, it was known that they can’t control their body temperature, or they are at high risk of pressure ulcers, or they need bowel and bladder care – whereas before, things like that might not be discovered until it was too late.”

The project has attracted such esteem it is going through the process of accreditation by both the Royal College of Nursing and NHS England – testament to the huge impact it has made to frontline healthcare. 

“As well as being so important for the patient, it helps the nurses as well with their workload,” says Carol. 

“If you do the bowel care, they’re not going to be incontinent throughout the day. So you’re not going to have to keep going back and cleaning them up. They’re not going to get pressure ulcers, or excoriated skin.

“So for a number of reasons, this has had a really positive impact, and we hope it is given the accreditations as I think that, while the majority of nurses do take notice of it, this would make it be considered as being an ‘essential’ if it came from the RCN or NHS England.”