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Exclusive: Trust ‘listening’ to sickle cell patients to drive improvements

The chief executive of a trust, which made headlines when a patient died due to a lack of staff training in sickle cell disease, has made significant changes and wants to further raise the profile of the condition.

Pippa Nightingale, chief executive of London North West University Healthcare NHS Trust and a former midwife, outlined to Nursing Times the measures she has introduced across her organisation.

“We hadn’t listened to the patients”

Pippa Nightingale

These include an overhaul of training and the restoration of sickle cell disease resources, which were lost during Covid-19.

The recognition that something had to change came when 46-year-old Tyrone Airey died at the trust’s Northwick Park Hospital in 2021.

London-based musician Mr Airey, who had previously been diagnosed with sickle cell disease, was admitted in the early hours of 16 March 2021, complaining of severe pain in his chest and back.

Tyrone Airey

Repeated failings in care, largely centred around the management of pain relief medication, ultimately led to his death by painkiller toxicity, according to an inquest.

It ruled nursing staff had “insufficient training” in sickle cell pain management and sparked a reckoning into the way the disease was treated at UK hospitals, including those run by London North West.

Leading the change from inside the trust has been Ms Nightingale, who joined as chief executive in February 2022, just short of a year after Mr Airey’s death.

Ms Nightingale told Nursing Times that she began working with Mr Airey’s mother, Lorraine, to open a dialogue between the trust and the sickle cell community.

“When I joined I was briefed on the tragic case that we’d had here, and my first response was to reach out to the family,” Ms Nightingale said.

“Tyrone’s mother is so brave and committed to change, it’s amazing. [She and I] spoke about how we could work together to change things.

“We hadn’t listened to the patients, that’s what I’ve heard from the sickle cell community,” said Ms Nightingale, who was named in a list earlier this year of those making a significant impact on the NHS.

NHS 75: Nursing Times impact list

“The danger we [then] had is that we would go and make changes without listening to them,” said noted.”

Last October, the trust held an engagement event involving clinicians from London North West and people with sickle cell disease. Ms Nightingale said the event quickly flagged up what had gone wrong.

“It was obvious to me that we had changed the way we did certain things during Covid, and that those things had disadvantaged sickle cell patients, and they were not told about these changes,” she said.

“If we had done that better, they might have understood why we had to make those changes, and change some clinical pathways. But what was then evident, was that we are slow to put things back, as is often the way in the NHS,” she said.

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During the listening event, members of the sickle cell disease community told Ms Nightingale and her team that it seemed like the disease was not well understood by clinicians.

They told her that they felt labelled, stigmatised and often that it was assumed they were only presenting in hospital to feed a morphine addiction. Untrained and non-specialist clinicians would assume the hospital presentation was self-inflicted, they told her.

Ms Airey, speaking to Nursing Times, described her son as “intelligent, charismatic, a true creative person”, and someone who “loved life”.

However, she said, that was not the person that clinicians described to her, and to each other, during his hospital stay.

“The focus in clinical notes [revealed during the inquest] on behaviour rang the biggest alarm bells for me, in terms of the care he had,” said Ms Airey.

She recalled her shock at finding out that clinicians at the hospital, when confronted with her son unable to bear extreme pain, failed to treat his symptoms and, instead, called security on him at one stage.

At the listening event, sickle cell patients told Ms Nightingale’s team they would do everything to avoid coming to hospital and aired frustration at the lack of access to treatment outside of an emergency.

Ms Airey said the treatment of her son, and other sickle cell patients in this way, was “100% because [they are] Black”.

She added: “The fact his pain relief was allowed to wear off – he could not cope with it – and they, instead, called security on a Black man, I think was totally cruel and inhumane.”

During the Covid-19 emergency period, London North West’s sickle cell patients had lost access to a day service at Central Middlesex Hospital, which was one of the UK’s oldest sickle cell specialist hospitals.

More on sickle cell disease

Ms Airey said the loss of some sickle cell facilities during the pandemic was something that she was not aware of until her son’s death.

“How do you not have specialist staff on a ward, it made no sense,” she said. “That was the biggest failing.”

Ms Nightingale told Nursing Times that she went away from the event feeling “embarrassed”, but added: “That’s often how the patients feel. The sickle cell community was not asking for the world.”

Among their main requests were the return of a named and senior specialist with whom they could liaise, better training for clinicians and the restoration of the pre-Covid arrangements for local sickle cell patients.

At a second listening event, Dame Elizabeth Anionwu – the UK’s first sickle cell nurse and a life-long advocate for proper treatment of the disease – attended and helped Ms Nightingale’s trust build a plan to fix what, it had become clear, was a broken system.

Ms Nightingale said: “It was clear that training was a huge thing. We couldn’t have a patient coming to us, scared about their condition, but feeling they have to over-advocate for themselves.”

“They wanted to bring our service back to how it was, they wanted someone like Elizabeth back in the trust, and better training,” she said, adding that, since then, significant changes have happened.

Training, as the top priority, was overhauled; almost all nurses in the trust have been put through an “extensive” training programme on sickle cell, including staff in A&E, haematology, and other wards.

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The trust has also set up simulation training that includes a video message from Ms Airey which tells staff about her personal view of being the mother of a man who attended, and died, in sickle cell crisis.

“I’m pleased they’re using [the video]. If [trusts] start to use case studies and simulations like this, it would be a step in the right direction,” said Ms Airey, noting that the changes should not end there.

“In whatever programmes [trusts] roll out, the clinical side needs to be improved but there needs to be changes in behaviour,” said Ms Airey.

“I can appreciate staff, if faced with aggression and they don’t understand the condition, they might have a human reaction,” she said.

Explaining in detail the changes to training at London North West, Ms Nightingale said it was about both providing safe care and understanding the patients, as well as being about the disease itself.

She said: “[Ms Airey] gives the social and emotional side of it, and it’s really changed the way staff react to the training. To have an understanding of the disease, you have to understand it psychologically, as well as clinically.

“Our staff have also gone through extended training on managing high-dose painkillers safely and monitoring it,” she added.

“This is now all covered here, and then we also worked with A&E to create a protocol for prompt assessments, hydration and painkillers for those on the sickle cell pathway, including getting them fast tracked to haematology to prevent long stays in A&E.”

She said the day service at Central Middlesex has since reopened and a nurse consultant specialising in sickle cell has started work, and begun to meet and understand her local patient base.

In addition, the trust has hired a clinical fellow, who is an expert in sickle cell disease.

“All this means our sickle cell patients have a place to ring up, ask advice, and if they need to get hydration, pain relief, or other treatments to prevent a crisis without an admission,” said Ms Nightingale. “These day services are really important; they’re all about prevention.”

The next steps, the she said, were extending the opening times of this day service, increasing it to weekends, up its staffing, and use newly acquired NHS England funding to set up a haemoglobinopathy triage emergency service at another of the trust’s hospitals.

Ms Nightingale said that her “ultimate goal point” was to make this a service open to her entire trust area, with information sharing to allow patients to be fast tracked there while in crisis.

As well as changes at the trust, attendees of the sickle cell community listening event told Ms Nightingale that they wanted nursing leaders, such as her, to bring the issue to light nationally.

Now her trust’s training target has been set for sickle cell, Ms Nightingale said she wanted it to be something that all trusts could adopt.

“Think about the Oliver McGowan training, and how that has really impacted training on caring for patients with learning disabilities, sickle cell needs something like that,” she said.

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Mandatory learning disability and autism training for health and social care staff was introduced earlier this year, in response to the avoidable death of a teenager with autism and a mild learning disability, cerebral palsy and epilepsy.

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“[The sickle cell community] were asking us to not just change things here but to use the power of our professional voices to change things nationally,” she said.

“They also wanted sickle cell to be recognised as a long-term condition,” she noted.

Getting sickle cell recognised as a long-term condition would give people with it further statutory protections and rights. This could include subsidised or even free prescription medication.

“I’d argue [this is] something which would be beneficial,” Ms Nightingale said. “I think it should be classed as one. I’ve been in the House of Commons having that debate.

“I felt it loud and clear that this population is tired of fighting, we should help with that fight, and we need to be their advocates and help them,” she said.

“We need to keep engaging and co-designing with the sickle cell community,” she said. “It’s about regaining trust in a unique population and that doesn’t come from one or two events.”

Ms Airey said she was “pleased” to hear of the continued involvement of the sickle cell community, and that – elsewhere in the country as well – there was more research being conducted into the condition.

“The most important thing is [London North West is] involving those with sickle cell. I am pleased with what [Ms Nightingale] is doing, and the things she is doing to raise awareness; I do commend her.

“It seems ridiculous that sickle cell isn’t yet considered a chronic condition,” she added.

What is sickle cell disease?

Sickle cell disease is a genetic red blood cell condition. It affects haemoglobin and causes red blood cells to form in an abnormal, crescent (or sickle) shape.

This prevents the efficient movement of oxygen around the body and causes build-ups of blood cells. In turn, this can cause respiratory difficulties, severe pain and fatigue.

Sickle cell crisis is when a patient with sickle cell disease experiences acute symptoms or complications relating to the disease. It is a medical emergency, and can cause extreme pain and more severe versions of their chronic symptoms.

Patients experiencing sickle cell crisis, according to National Institute for Health and Care Excellence (NICE) guidance, should be given pain relief, normally in the form of opioids such as morphine, within 30 minutes of A&E admittance.

Best practice then states they should be treated with a patient-controlled analgesia (PCA) pump, which gives them constant background doses of morphine and allows the patient to administer bolus doses for when the pain becomes unbearable.

The use, set up and monitoring of these pumps requires specific training for nurses.

The disease affects around 12-15,000 people in the UK. The vast majority are of Black African or Caribbean ethnicity.

Because of this, many Black sickle cell patients have reported being treated poorly by healthcare staff.

These bad experiences include being perceived as drug addicts when requesting the NICE-approved high morphine doses and finding themselves struggling to access care in the first place.

Nursing Times sickle cell clinical resources

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