New West Sussex Dementia Network launched to campaign for improvements through working together

With no national dementia strategy, the Ferring-based charity Beehive Care recognised the need for people to work together to bring about change.

Various organisations from across West Sussex were invited to take part in the launch of the network at Glebelands Community Centre in Ferring on Tuesday, January 6.

Jacqui Swindells, chair of Beehive Care, spoke of the previous work of Worthing Dementia Action Alliance, which was formed in 2013 and achieved a lot of changes for the better but lost momentum due to the Covid pandemic.

She said: "There is definitely an appetite for working together and I think that is the way forward for the future. We want to make positive changes for people living with dementia and make live easier for carers as well."

Although Beehive Care has led the charge, it is a community network for everyone, with quarterly meetings planned across the county and focused steering groups.

Rosemary Pavoni, chair of West Sussex Partners in Care, highlighted Oliver's Campaign and the Oliver McGowan Mandatory Training, a UK-wide learning disability and autism initiative that is now legally required for health and social care staff in England.

She spoke passionately about a similar need for mandatory training for those who look after people with dementia in care homes.

Rosemary said: "If one mum can achieve this, why can't we? We need to be able to lobby to get a prescriptive training programme for care homes.

"I think training and education have stood still, in fact I think it has regressed. At a time when other learning and development is evolving I feel dementia training is the Cinderella of social care."

Nurse consultant Alison Keizer focused on delirium, saying she made delirium training mandatory at Sussex Community NHS Foundation Trust and this has now been delivered to 2,500 staff. She has also written a policy and produced leaflets for families.

Alison said: "It is very distressing and not a nice thing. Anyone can develop a delirium but you are much more likely to develop a delirium if you have dementia.

"It is about getting the right environment. This year, my focus is on getting people treated at home because for a lot of people, that is the best place for them. Hospitals are not the best place for people with dementia."

Alison is also currently looking into links between dementia and diabetes, as well as how loneliness and social isolation affect memory loss.

She said: "It is now becoming more and more to the forefront that people who don't socialise might be more likely to be affected by mental health and also cognitive decline.

"It is really important that we have community hubs and places like that, and talk to people in their 40s and 50s about loneliness, as they are the next generation."

Matt Roberts, chief executive of Community Transport Sussex, explained how accessible transport is helping to get people out and about. His is the largest service of its kind in the county, with more than 50 vehicles, but he said there were a number of others across the county.

Matt said: "The main reason we exist is to respond to loneliness and social isolation through the provision of accessible transport services across West Sussex. We are there to help provide transport for those people who find it difficult to access public transport, or don't have their own transport."

The charity is in the process of forming a new partnership with Beehive Care in Ferring and Sight Support Worthing to bring more accessible vehicles to the area, and as a result there will be more dementia training for the volunteer drivers.

Faye De Waal, a Worthing-based occupational therapist, said: "It is so lovely to have so many people working together to improve services."

She highlighted the work of the Dementia Assessment Service and the young-onset dementia pathway, explaining it is a bespoke service for people aged under 70.

Faye said: "It has been running for just over a year. They are offered a needs assessment to look at what support we can offer. We have seen a huge rise in the amount of people who have been referred to our service but the numbers being diagnosed is still quite low."

Martha Pusey talked about her research study My Story My Future and the story-telling workshops that will be delivered in care homes as a result. This will enable people to talk about their future care and help with planning going forward.

The aim of the West Sussex Dementia Network launch was to form a robust community support network for people affected by dementia in any way.

Lynsey Tran, head of dementia services, said the next step would be to form a steering group. The second network meeting will follow in April, ahead of Dementia Action Week in May.

Lynsey said: "We have got to keep the momentum going."