The Welsh Ambulance Service is working with people affected by dementia so that it can improve their experiences.
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The Welsh Ambulance Service, called out to an increasing number of people with dementia for emergencies and planned transport, wanted to ensure it was meeting their needs and respecting their rights, along with those of carers.
It has been making changes based on a Dementia Plan, developed from patient feedback.
‘People with dementia expected to receive a timely response in an emergency,’ says Alison Johnstone, Programme Manager for Dementia at the Welsh Ambulance Services NHS Trust.
‘However they reported poor experiences of calling 999 services and found it difficult to use the telephone to communicate in a stressful situation.
‘We made a commitment to improving their experiences and those of their carers and families.’
The Dementia Plan led to new training for staff, including dementia awareness sessions for those working in the control room, which people living with dementia have helped to present.
Leigh Keen, a paramedic and Dementia Friends Champion, has been delivering Dementia Friends information sessions to paramedics and patient transport staff for the past four years.
‘If a person with dementia is unwell or has an infection, the treatment is no different, it’s more about communication,’ she says. ‘It gives our front line staff more confidence – the extra knowledge might give someone a few tricks up their sleeve to reassure a person with dementia or start a conversation with them.’
Andy Woodhead, who has dementia with Lewy bodies, was treated by an ambulance crew after passing out at home.
‘It was just lovely to hear a kind voice – that was worth more than a million pounds to me,’ says Andy.
‘I wasn’t the easiest of patients while I was coming to, but the paramedics were brilliant,’ he says. ‘My carer explained that I had dementia and I think they treated me accordingly. They really took time to make me feel comfortable, not agitated.
‘They were aware of the problems that dementia can cause. Fear is a big problem, and anxiety. And you do become very agitated. I think spending time just calming me down made a big difference. It was just lovely to hear a kind voice – that was worth more than a million pounds to me.
‘I don’t fear an ambulance coming now. I don’t live with that, because of the good experiences I’ve had in that situation.’
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People affected by dementia have also been visiting ambulance stations and contact centres to give their opinion on how dementia friendly they found the vehicles, equipment and environment. They have also met with call handlers and senior management.
Recognised by Alzheimer’s Society as working towards becoming dementia friendly in October 2017, the Welsh Ambulance Service was named Dementia Friendly Organisation of the Year for larger organisations at last year’s Dementia Friendly Awards.
Its Dementia Plan has also created a better process for patient referrals and stronger partnerships with other services.
Leigh was involved in a trial, now in practice across Swansea, where ambulance staff could refer patients who they thought might have dementia but who hadn’t been diagnosed.
She says, ‘They’ll check them out and have a conversation. If something isn’t quite right, or the family mention something, the staff member can carry out a memory test. If they still have concerns, they can refer the person to our acute clinical team and start the ball rolling to getting a diagnosis.’
A special Dementia Taskforce has been created to ensure the Dementia Plan continues to develop and deliver. It includes Dementia Friends Champions, ambulance service staff and patient representatives.
‘The taskforce saw that it wasn’t about how to solve us – the people with dementia – as a problem,’ says Nigel.
Nigel Hullah, who has posterior cortical atrophy, is a member of the taskforce and was also part of the call handler training.
‘The taskforce saw that it wasn’t about how to solve us – the people with dementia – as a problem,’ he says. ‘It was about engaging with us and giving us a voice in all parts of the process. Our contributions were valued and acted on.’
The ambulance service has also produced a communication guide for staff and volunteers to aid their interactions with people with dementia. This was created with Society-facilitated groups of people with dementia who meet to have their say on local and national issues.
‘We continue to talk and listen to people affected by dementia so they can have a strong voice in our plans,’ says Alison. ‘Patient expectations and experiences drive improvement across our services.
‘We are so proud of the positive impact our work is having on people living with dementia and their carers.’