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Listening to the needs of people affected by Multiple Sclerosis

People given a life-changing diagnosis of Multiple Sclerosis (MS) now have access to tailored information to help them understand what support is there for them in North East Lincolnshire.

The newly diagnosed patient information pack and a new MS leaflet are something people affected by MS and their carers asked us to create at a listening event held by North East Lincolnshire Clinical Commissioning Group (CCG) last year.
While some patients were clued up about what support exists, others told us they felt isolated and wanted more information from the outset.

The CCG held a follow up event last week at the request of people living with MS to look at how the views and experiences they had shared with us had been taken into account when shaping local services.

Donna Redhead, service manager for MS services with the CCG, said she had planned the event to bring to life what services and support were out there for people living with this long term condition.

“Written information is fantastic and the newly diagnosed patient pack and leaflet are being really well received but we also wanted to make sure there were people from a wide range of organisations and groups at the event to present and answer questions,” Donna explained.

“For example, we asked a local coffee group attended by MS patients what speakers they would like at the event and they asked if someone from the Department of Work and Pensions could come along to talk to them, which they did.”

The event also featured specialist MS nurses from Grimsby and Hull, the local rehabilitation team, volunteer support groups, carers support, Healthwatch, Accord, the MS Society and the MS Trust who spoke about the latest research into the condition.

Early discussions were held about developing an education programme for MS patients.

“This was a really lively and well attended event which people living with MS had asked us to make happen,” said Donna.

“People continue to share their own experiences and these really are helping us to improve services. We are not fully there yet but events like this help us to make sure everything we do is built around the people who use the services and their families and carers.”

One service user at the event told us: “Being active and valued by others will encourage others to interact and express their views and experiences. Thank you for making today possible, it has been valued by myself and others.”

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