Specialist learning disability liaison nurse Jainab Desai is making meticulous checks of the complex arrangements to receive a tricky patient with learning disabilities, with staff of the day surgery unit at Royal Bolton hospital.
She has worked for weeks with staff, family and carers of the profoundly disabled and terrified woman (who needs a vascular procedure). This is to make sure that the patient will not freak at the entrance to the operating theatre, forcing the cancellation of the operation.
Desai has identified a hospital back entrance that the patient will not recognise and organised a screened alcove to be equipped like a sitting room for waiting. Most importantly, two consultants will follow the vascular surgeon, while the patient (a diabetic) is still under anaesthetic, to carry out vital retinopathy and dental checks she would not receive in any other way. A check the next day reveals a resounding success.
"The key objective is a successful health outcome," says Desai. "But you want it to happen with a positive experience for the learning disabled patient and minimum distress. It only works in this hospital, because there's commitment from the top down."
At any time Desai could be co-ordinating the care of up to six people with learning disabilities at Royal Bolton hospital. This is set to rise as researchers predict that the numbers of people with learning disabilities in the UK will increase by 14% between 2001 and 2021. They are also 58 times more likely to die aged under 50, often of preventable causes.
The fight to get specialists such as Desai into integrated posts in acute settings has been hard won. She was already in post in 2007 when Mencap's explosive report Death By Indifference, highlighted the cases of six people with learning disabilities believed to have died unnecessarily as a result of receiving worse healthcare than people without learning disabilities. She was a rare breed at the time.
Sir Jonathan Michael's report, Healthcare for All (2008) added fuel to Mencap's campaign by identifying gaps between the law, policy and the delivery of effective services for people with learning disabilities.
Since then progress has been made – 79% of acute settings have a nurse appointed to this kind of role – but there is concern that these roles will be sacrificed in the scramble to reorganise the NHS against a background of service cuts. Mencap's report earlier this year (74 Deaths And Counting), reveals continued institutional discrimination in the NHS towards people with a learning disability.
The Royal College of Nursing's nursing advisor for learning disabilities, Ann Norman, already knows of cuts to at least four UK's consultant nurse roles (of around 35). An RCN survey of 500 disability nurses in May showed that three out of four were experiencing cuts in services. Reports from primary care echo this. Norman says: "We are having to run to keep up, to protect frontline services."
Desai's role is a model of what learning disability campaigners want to keep in place. Based in the hospital since 2006, she works in partnership with the integrated service run by Bolton council, carers, staff in community posts and patients themselves to smooth their way into hospital and ensure they receive the best and most appropriate care.
This means knowing who is being admitted, tweaking the services to accommodate them and visiting the wards during their stay. She is also on hand to help staff with emergencies.
Much of Desai's work is about training. At first many staff could not recognise learning disability, let alone deal with it. Now, most of them understand and accommodate their needs. This could be by creating a low-stimulation area for a hypersensitive person, bringing in a parent to teach nurses how to feed an autistic patient with rigid behaviour patterns, or simply arranging for an elderly parent to stay with their disabled offspring overnight.
She's also worked with the PALS services to produce a hospital passport, detailing specific care needs such as eating and drinking. Her work is incorporated into the fabric of the hospital's work, through her role as Safeguarding Adults lead.
This is a complete change from the way the Blackburn-born nurse started out, doing some of her early training in Calderstones – one of the large Victorian institutions where most people with learning disabilities then lived.
She is passionate about her work: "It is also about their families. I have seen how parents struggle with an adult offspring who is not sleeping and self-harming because they can not communicate their pain."
The fear of campaigners for learning disabilities is that a combination of cuts and NHS reorganisation will see posts and services go. Mencap's national officer, Beverley Dawkins, sees this as reflecting fundamental attitudes: "When they get services right for people with learning disabilities, they get them right for a whole lot of others, like the elderly and people with dementia and stroke victims."
Mencap is now working on a primary care charter aimed at commissioning CCGs. Dawkins adds: "We're actively trying to influence the new NHS structure." Guardian Professional.
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