Healthcare inequalities

Training programmes are being rolled out for healthcare staff in the UK to improve the support available and the understanding and skills of staff. In Wales, the Paul Ridd Learning Disability Awareness Training Programme was launched in April. For the family of Paul Ridd, who set up a foundation in his name to campaign for change, it represents a milestone following his death 13 years ago.

Paul’s sister Jayne Nicholls, one of the founders of the Paul Ridd Foundation, says: ‘We’ve worked tirelessly to raise awareness of the inequalities faced by people with a learning disability when accessing healthcare. This training will give staff some awareness of the barriers faced by people with learning disabilities and will provide the tools to remove these barriers.’

Failures in care that lie behind the initiatives

Oliver McGowan, who was mildly autistic and had epilepsy and a mild learning disability, was being treated for a seizure in 2016 when he was given antipsychotic drugs by hospital staff to sedate him.

Eighteen-year-old Oliver, pictured, died in intensive care 17 days later after a rare side effect caused his brain to swell. The drugs were given against his and his family’s wishes. He did not have a mental illness.

His parents, Paula and Tom, believe his death could have been prevented if doctors and nurses had been trained to understand how to make reasonable adjustments for him. Their position was backed up by subsequent reviews into the case.

The learning disability mortality review into Oliver’s death said that if he had been assessed correctly on admission to hospital and staff had read his hospital passport, he might never have needed to be intubated and sedated. It said there was a general lack of understanding and acknowledgement of Oliver’s autism and how he presented when in seizure.

Following his death, his parents led a campaign for more training for healthcare staff. A petition received over 50,000 signatories and led to a debate in parliament. In 2019, ministers committed to introducing mandatory training.

Paul Ridd, who had severe learning disabilities and was in his fifties, died in 2009 after being cared for on a general ward following treatment for a bowel perforation.

Paul, pictured, died from respiratory problems after being transferred from intensive care to the general ward. An inquest into his death was told there were omissions in a number of areas of his care. The inquest found that he died from natural causes, with neglect a contributing factor.

In a report on his care, published in 2011, the Public Health Services Ombudsman for Wales said the care he received was ‘abject and a long way below reasonable standards’. One of the report’s recommendations was learning disability awareness training for staff.

The Paul Ridd Foundation was set up by his family in his memory to campaign for improvements in care. The foundation has worked with Mencap to champion the introduction of mandatory training.

The launch of the training in Wales comes as rollout of a similar programme continues in England, in no small part thanks to the campaigning work of the family of Oliver McGowan.

The Health and Care Act 2022, which gained royal assent in April, makes it mandatory for all services registered with the Care Quality Commission to ensure their employees receive learning disability and autism training appropriate to their role. An announcement on the format of the Oliver McGowan Mandatory Training in Learning Disability and Autism is expected soon; several approaches have been trialled over the past two years.

Nurse as advocates

Ministers in England and Wales believe the training programmes will lead to significant improvements in the way people with learning disabilities and autism are cared for. The evidence from the training so far in England has shown a significant impact, with an increase in the knowledge, skills and confidence of those who took part.

Oliver’s mother Paula McGowan says she was overwhelmed by the effect the training seemed to have. ‘The standout comments for me were staff saying that they would change their practices, and to hear staff reflect on how they felt empowered to advocate better for people with learning disabilities and autistic people.

‘Together we’re beginning to change culture, hearts and minds. There is a lot more to be done, but that journey has begun. Oliver would be so very proud.’

The changes are not going unnoticed elsewhere in the UK. In Scotland, ministers have pledged to introduce mandatory training in learning disabilities and autism for all NHS staff, as part of a Towards Transformation plan set out by the Scottish Government last year. A spokeswoman said the evaluation findings from the Oliver McGowan training pilot in England would ‘help inform our approach’.

And the Department of Health in Northern Ireland said that, while there is no plan at present to introduce mandatory training, the issue is being kept under review as it watches developments elsewhere.

The need for greater understanding and knowledge among NHS staff is clear, given the poorer outcomes for people with learning disabilities and autism.

Melanie Davies (centre, standing), a nurse who supported the campaign for mandatory training, says its success will depend on access to the expertise of learning disability nurses

Picture credit: Stephen Shepherd

Clear need for wider knowledge

The Learning Disabilities Mortality Review Programme (LeDeR) has consistently shown that people with a learning disability have a lower life expectancy and are more likely to have avoidable medical causes of death, compared with the general population.

Not identifying when patients have a learning disability, failure to recognise when they are unwell and a lack of involvement of carers are all factors. Even simple changes – known as reasonable adjustments – can make a huge difference. These can include having longer appointment times, quieter areas and easy-to-read information.

It is why an LeDeR programme report recommended the introduction of mandatory training for all staff in 2017 – something that has been reiterated every year since.

Mencap chief executive Edel Harris believes the training will ultimately save lives. ‘At least 1,200 people with a learning disability die avoidably each year,’ she says. ‘Mandatory training will make a huge difference to the lives of people with a learning disability and allow them to get the health and care support they rightly deserve.’

Research by the charity found that before the Oliver McGowan training rollout started, nearly half of hospitals did not include information about learning disabilities in their induction programmes and nearly a quarter of universities did not teach about reasonable adjustments in their medicine and adult nursing courses.

Not without challenges

RCN professional lead in learning disabilities Jonathan Beebee says this is why the training programmes are being warmly welcomed by learning disability nurses. But that does not mean the programmes will be without challenges.

They are huge undertakings given the number of staff involved, and Mr Beebee admits he has some worries about the practicalities of delivering a mass training programme across so many different settings.

Picture credit: John Houlihan

‘I understand that each area will have the flexibility to devise their own delivery plan,’ he says. ‘There may be concerns that there could be a delay in getting these plans under way and the momentum that has been achieved through these pilots could be lost.’

Melanie Davies, named RCN Nurse of the Year in 2017 for her work supporting the Paul Ridd Foundation in campaigning for the introduction of mandatory training, is delighted that it is being introduced. ‘It has taken too long, but I now believe it will make a difference,’ she says.

Ms Davies was working as an adult nurse at the hospital where Paul Ridd died and was motivated by the fact that one of her own family members who had learning disabilities had also experienced poor care. ‘Staff who don’t have learning disability training often haven’t got the confidence or skills needed to recognise what needs to be done. I’ve seen that myself,’ she says.

But she adds that it will be vital that there are enough specialist learning disability nurses to support general staff. ‘Hospital learning disability liaison nurses in particular are crucial, so nurses and other staff on the wards have that expertise to call on.

‘Without the right learning disability staff, the impact of the training will not be what it should.’

How ‘seeing the person not the disability’ can make a difference rcni.com/Melanie-Davies

Further information

Oliver’s Campaign olivermcgowan.org

The Paul Ridd Foundation paulriddfoundation.org

LeDeR Programme (2019): Actions from Learning tinyurl.com/leder-actions

Scottish Government (2021): Learning/intellectual disability and autism: transformation plan tinyurl.com/ld-plan-scotland