Asthma clinic empowers people with a learning disability

A nurse-led chest clinic is helping respiratory patients learn to manage their conditions

A nurse-led chest clinic is helping respiratory patients learn to manage their conditions

Respiratory nurse specialist Sharon Stothard pictured with a patient in the asthma
clinic at Sunderland Royal Hospital. Picture: Jim Varney

A chest clinic set up to help patients with learning disabilities has not only transformed their hospital experience but has also supported them to manage their asthma and saved money.

The asthma clinic at Sunderland Royal Hospital, run by respiratory nurse specialist Sharon Stothard, has proved so successful that it has been rolled out to support patients with learning disabilities who have any respiratory disease.

After identifying 28 asthma patients with a learning disability who needed support, she embarked on a six-month project to help them improve their asthma management.

It was a success. Evaluation showed a 25% reduction in this group of patients accessing the emergency department, ambulance services and out of hours GP services.

‘It is difficult to determine whether this decline is due to empowerment, greater understanding of self-management, compliance or a combination of all three,’ says Ms Stothard.

‘These vulnerable patients were being treated but they were not getting the follow-up support they needed’

Sharon Stothard, respiratory nurse specialist, Sunderland Royal Hospital

‘There were a number of patients known to the learning disability team who were frequently attending the emergency department, and then the review chest clinic,’ says Ms Stothard.

Quality of life

‘I wanted to empower them to manage their own respiratory disease and improve their adherence to treatment and respiratory management plans – and their quality of life.’

She asked the data team to send her the names of those attending the emergency department (ED) every day.

‘A theme was coming through,’ says Ms Stothard. ‘These vulnerable patients were being treated but they were not getting the follow-up support they needed.

What changes improved patient experience?

‘It was a relatively small number of patients, but they were high users of out-of-hours services – ambulance, 111, out-of-hours GP and the emergency department.’

A service making a difference

Some comments by a patient, a family member and a care team:

  • Lesley, a patient with learning disabilities: ‘I have known Sharon for a long time, she is my friend and helps me take my inhalers properly.’
  • George, the father of a patient with severe learning disabilities: ‘Sister has spent a lot of time with my son, encouraging him to use his sleep apnoea machine. She is always happy and approachable and very supportive.’
  • Care team of a patient with autism: ‘We now have a management plan tailor-made to suit the changing needs of our client, and no further hospital admissions.’

‘For me it was about empowering these patients to manage their condition by improving their experience in the clinic,’ says Ms Stothard.

Patients are initially seen when they come into the ED to help continuity of care. They are then seen in Ms Stothard’s specialist clinic within a week of accessing emergency services.

In the standard chest clinic, routine appointments lasted for only ten minutes. ‘The first two clinics I ran for patients with a learning disability overran by hours, as patients needed much more time – at least 30 minutes each,’ says Ms Stothard.

‘Now the first contact is mainly fact-finding and getting to know the patient, building a relationship with them. It is important to know what it is that they need to understand and what makes them tick, learning about them as a person.

Picture: Jim Varney

‘These patients have high anxiety levels and often low levels of understanding and literacy. Central to this empowerment has been making sure they have the tools they need to manage their asthma. We have adapted self-management techniques in a creative way to meet the needs of these patients,’ she says.

Tailored plans

Self-management plans are tailored to the individual and are patient-centred.

‘I go through inhaler technique to assess their ability and consider what other things need putting in place – specialist equipment such as incentive peak flow meters – on a patient-by-patient basis,’ says Ms Stothard. ‘Of the people who come to this clinic, 90% would not manage the asthma plan by Asthma UK.’

Many patients struggle to understand the literature available in a normal clinic, so easy-read versions were created, including appointment letters, asthma education leaflets and an easy-read self-management plan.

With the help of the hospital’s learning disability lead nurse, Ms Stothard developed a page on the Sunderland Action for Health website, a resource specifically for patients with a learning disability. It includes a video link to a demonstration of inhaler technique.

‘Some of my patients use that video twice a day to take their inhaler,’ says Ms Stothard. ‘It was quite simple to do but effective and not massively expensive. Previously, lots of patients had inhalers but nobody had checked that they could use them.

‘I try to find the right “triggers” for the patient – whether they understand better with pictures or words. I send pictures to some of them to remind them to take their medication.’

‘I try to find the right “triggers” for the patient – whether they understand better with pictures or words’

Sharon Stothard

There is also a text service alerting patients to pollen levels or bad weather, and the team visits patients admitted via the ED to assess and reassure them, ensure continuity of care and maintain the relationships that have been built in the clinic.

Ms Stothard says there have been challenges, including maintaining plans when patients have several carers.

‘I love chest clinic nurses’

‘I’ve had asthma all my life,’ says Lynn, 29, who visits the chest clinic run by Sharon Stothard.

She has been visiting the chest clinic for four years but previously only saw the respiratory nurse specialist occasionally. ‘When I go in to see Sharon I can talk about things, about how I am and how I’m doing,’ she says, adding that seeing her has been helpful.

‘She makes me quite happy and sometimes I have a big cry, it just depends on how I am.’

Asked what she has to do to manage her asthma, Lynn says: ‘I have to take my inhalers. I have lots of different inhalers. But I am not scared when I am too out of breath now. I love chest clinic nurses.’

Carer continuity

‘We have developed strategies to address the lack of carer continuity for some,’ she says. ‘Carers come in and we teach them, and if the patient has respite care I go and teach the carers what they need to know to support the patient.

‘We also have a “patient passport” for our patients and every contact is put into it. One of our patients ended up in ITU because he was so stressed about being nebulised in A&E. Now we have a plan here to nebulise him while he is asleep, or when he is calmer,’ she says.

‘I try to ensure that every carer or GP gets a copy of the management plans. I get in touch with practice nurses and I’ll go and speak to them if the patient is more complex.’

Diane Palmer, deputy director of nursing at City Hospitals Sunderland and South Tyneside NHS Foundation Trust, says: ‘We are very proud of the fantastic work Sharon has been doing. Such simple steps make a huge difference in supporting our patients in managing respiratory diseases so they don’t end up having to make unnecessary trips to emergency departments and GP services.

Transferable to other areas

The specialist clinic was approved by the business management team at the end of the pilot. ‘We now have 40 patients and are managing these patients more effectively,’ says Ms Stothard. ‘We are saving on emergency costs, and the clinic didn’t cost anything to set up.

‘Such simple steps make a huge difference in supporting our patients in managing respiratory diseases’

Diane Palmer, deputy director of nursing

‘The initial project only encompassed asthma patients but was such a success that the service has now been rolled out to all respiratory patients with learning disabilities, including sleep apnoea, lung cancer, chronic obstructive pulmonary disease and tuberculosis,’ she says.

‘It is patient-friendly and empowers patients to monitor and manage their condition. And it is really transferable to other areas.’

Elaine Cole is editor, RCNi projects

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