It is hard enough arriving at hospital sick, fearful and apprehensive. Worse still, however, if you have a disability. Patients with disabilities are usually faced with environments not geared to their requirements - and where staff shortages and lack of training means there is often not time or expertise to cater to their needs.
Although 100,000 disabled people come into contact with health care services in the UK every year, the nurse training curriculum does not address the issues of caring for a disabled person. Consequently, according to disability charity John Grooms, some disabled people leave hospital promising never to return.
To address this, the charity developed a unique disability nurse specialist role at Colchester General Hospital –the disability suite was designed and equipped in a side room on one of the wards at the hospital, it was opened in Feb 2004, the only disability hospital suite for disabled people.
The nurse who took up this opportunity is Chris Wiseman and the project has been up and running since June 2003. Patient feedback has been extremely positive. Nurses at Colchester General have also given good feedback about Chris’s work, describing the post as ‘a valuable resource to assist them’. Although funding has not been found to continue the post full time, John Grooms and the local trust is now collaboratively supporting the role for 20 hours a week.
Chris passion for advocating the rights of people with disabilities stems from her early days in nursing. After qualifying in general nursing in 1985 she completed her disability training, working in the community and for charities to supported people with disabilities.
'Part of the appeal of working in this area is being an advocate,’ she explains. ‘The rights of disabled people are not always recognised, and you have to fight for the things many of us take for granted, such as being able to get housing, access to health care and being recognised as an independent individual.’
Chris went on to become a specialist nurse at one of John Groom’s residential units for people with physical disabilities. At this time, the charity was receiving feedback countrywide from some of its residents about their hospital experiences. This feedback exposed some serious deficiencies in the hospital system – a lack of awareness, insufficient equipment needed to care for them, and a failure to really listen to their needs.
Chris’ manager’s response was to put forward a proposal to the local trust to create a disability nurse specialist post within the hospital. Chris was ideal for the role in that she had worked in both hospitals and in the community, understood the kind of support people with disabilities received at home and had also worked closely with social workers.
Fundraising paid for Chris’s new post, which she believes is unique in that it links the voluntary sector and the health care trust to respond to the needs of disabled people who are admitted to hospital. The post also promotes awareness of disability issues and how disability can impact on someone’s health.
Her first challenge, she recalls, was to make people aware of her role and the benefits it could bring to staff and patients alike.
‘When I started I went round every ward to say who I was and what my role was. I contacted user groups like the MS Society and Headway to make them aware of my post and we also distributed patient leaflets.’
She also forged strong links with the people who support service users at home once they are discharged from hospital - district nurses and social workers, physiotherapists and occupational therapists.
Now when someone with a disability is admitted to Colchester General, help is at hand to address their specific requirements. Chris will meet the service user, assess their needs and then advise the nurses as to the specialist equipment they might require. In this way she is able to overcome many of the difficulties people with disabilities face in health environments.
‘The hospital environment isn’t very well adapted for disabled people,’ she says. ‘Often they can’t get into the showers because there isn’t enough space, or if they are quadriplegic they can’t press the call bell system.
‘Sometimes they can feel isolated in hospital because they lose their independence. They can’t get out of bed and they may not have the use of their own wheelchair. As a result an independent individual can end up feeling they have lost the abilities they normally have at home.’
One solution has been to adapt a room in the hospital to include a shower big enough to enable someone in a wheelchair to turn around, and special controls to allow quadriplegics to operate light switches and shut curtains and use the nurse call system.
The hospital has also introduced disability link nurses on each ward who meet every other month to discuss with Chris any problems they have experienced in caring for someone with a disability and how these can be solved.
This co-ordinated approach is delivering results. ‘When we first met the link nurses wanted advice on the specifics around admitting someone who has a disability. Now there is an admissions folder on each ward they can refer to.’
As well as running teaching sessions for link nurses, Chris has also taught nursing students about meeting the needs of people with disabilities.
‘One student admitted they weren’t sure how to move or dress someone who was severely disabled – they said they didn’t want to hurt them. So I talked through ways of overcoming that, about knowing how to move someone, about the need to take time.’
Chris is all too aware that time is often in short supply, which means the care needs of people with disabilities are not always met. She is therefore mindful of the importance of creating awareness while also recognising the pressure nurses are under.
‘It’s a thin line – you want to advise, toassist, but you also don’t want to make people’s work harder or to alienate them. You have to be sensitive about when and how you approach people. I work closely with nursing staff to advise them but I also work hands on which helps them and is also useful for training purposes.’
Chris believes that sensitivity, patience and acknowledgement of the barriers faced by disabled people - which may make their day to day life more difficult – are crucial qualities when working with disabled people.
‘Disabled people want to be recognised as individuals and to be in control of their lives,’ she stresses. ‘And to help them do this, you need to listen to them, because they know their disability and how best it should be managed.
‘Unfortunately, in health care there is not always the time to spend to really listen - and that’s where I come in. And the most enjoyable bit about my job is that disabled people say my presence in the hospital really has made their stay more positive. My dream now would be to see a role like this in every hospital throughout the country.’
Good practice in disability nursing:
Ask the individual what their home life is like, who, if anyone assists them at home and how that assistance is funded.
Identify if they have a social worker, physiotherapist or occupational therapist that offers support to them at home.
Don’t focus on what the person cannot do, but on how an environment can be adapted or changed to promote a positive admission experience for them.
Arrange to get specific equipment from home, for example the person's own wheelchair.
All medical and nursing staff should be aware of the Disability Discrimination Act 1995 (particularly Section 21) and its legal implications for practise.
Work with other members of the multi disciplinary team and community services to ensure a positive hospital experience and seamless service upon discharge.
VOL: 102, ISSUE: 31, PAGE NO: 18-19