As head of operations for Making Space, I’m surrounded by people who work towards improving the lives of people with dementia. But every now and again, you see someone for whom it’s not just a job; it’s a way of life. Irene Jervis is one of those people.
As a dementia support worker, Irene has a deep knowledge of the condition combined with a level of empathy which allows her to connect with people on many levels. She’s also incredibly determined and was the driving force behind the Scarborough Dementia Engagement and Empowerment Project (DEEP) group.
When Irene saw a post advertising funding for DEEP, which is a UK-wide network, she immediately started making enquiries and bringing together people who could help. She’s really dynamic and won’t let things drop, and that’s exactly what she did when she saw the post asking for applications. She spoke to friends and approached other groups she thought could help, and was the only bid from North Yorkshire that was successful.
The resulting group – Scarborough DEEP – is made up of people with dementia, supported by their carers, who meet monthly. One of their main focuses has been to campaign for people with dementia to be given blue badges for disabled parking. Currently, you need to demonstrate that you have difficulty with mobility to get a blue badge if you live in England. Wales allows people with cognitive problems to get a blue badge and Scotland has been piloting a similar scheme. The members of DEEP orchestrated a comprehensive campaign to persuade the government in England to do the same.
Dementia, particularly in the early stages, can be very much an unseen illness. However, the problems caused by short-term memory loss mean that a simple shopping trip can cause confusion and distress if a car is parked in the middle of a large car park, or a distance away from the location being visited. With over 450,000 people living with dementia in England, 15,000 under the age of 65, the potential benefits of awarding them blue badges are huge.
As well as lobbying the government for country-wide change, DEEP highlighted problems with accessing the online application form to their local authority. The way the form is designed prevents people who don’t have physical mobility difficulties from moving to the next stage of the process; when asked if they have mobility issues, clicking ‘no’ closes the form. After highlighting this issue, the local authority has now created a special questionnaire for people with dementia to complete over the phone to allow them to grant blue badges under the current criteria.
After starting with just six members, DEEP’s campaign and awareness-raising resulted in almost 1,400 signatures and prompted a public consultation. The blue badge campaign is just one of the activities of the DEEP group under Irene’s guidance. The group also developed an education programme for people living with dementia who are newly diagnosed to reassure them they can still live an active and fulfilling life.
They have also performed a dementia audit of gardens on the South Cliff in Scarborough and successfully applied for a heritage lottery grant to improve signage and pathways to make them more accessible for people with dementia.
As a whole, DEEP is a team who have, without a doubt, improved the lives of those in their community and are well on the way to orchestrating real change for people living with dementia across England. The drive and commitment of this group of people living with dementia and their carers, plus the determination to improve lives for others in similar positions not just in their community but across the country, is remarkable.
This is in no small part down to Irene, who includes, empowers and motivates members. She’s highly experienced in her knowledge of the different dementias, and in dementia care. She brings this knowledge and understanding to everything she does, and her quiet demeanor and natural empathy enable her to win the confidence of very different individuals living with dementia.
Her innate ability to identify the skills and capabilities of individuals and ensure that they are fulfilled in a manageable way is a skill in itself. The extensive observations she makes of the subtle changes people undergo and the changes she makes accordingly mean that no group member feels their voice is not being heard or they are not able to contribute.
The blue badge campaign is a key example of her drive, and her mastery of detail enables those with dementia and their carers and volunteers to have an effective voice. Another DEEP project has been the ‘banner unfurling’ campaign at York Rail Station to raise awareness about the need to make train travel more accessible – Irene’s creative thinking allows her to develop ideas that will help promote awareness around dementia, both on a national level and within her local area.
She has forged excellent relationships with the local theatre, where the DEEP group meet and they now have input into dementia friendly scripts and performances. She also managed to direct some funds towards a play about dementia in Scarborough, using the money to subsidise ticket prices at a matinee performance for sixth formers and nursing students, and arranging a Q & A session with those living with the condition.
Thorough, caring, compassionate – they’re words often overused, but that’s Irene. Whatever needs doing, she’s there backing up the people she works with. Clients are never left out; Irene started a couple of groups, including DEEP, but she also attends the DAA groups. When Dementia Week comes around, Irene is always the first one to come up with ideas, that’s just what she does.
Dementia has been part of her life, she nursed her mum when she lived with the condition and she is happy to use her experiences to help others. We were delighted when she won the Leading Change, Adding Value Compassion Award at the Markel 3rd Sector Care Awards.
She’s one of a rare breed of people who don’t even realise what they’re doing is special, even though they have such a positive impact on people’s lives. Now that her achievements have been recognised with a national award, hopefully she will know just how valued she is by so many people.
The Markel 3rd Sector Care Awards is run specifically for the voluntary care and support sector. Nominations are now closed for this year’s Awards. Be the first to find out who the finalists are by following the Awards on Twitter: @3rdSectorCare #3rdSectorCareAwards
With thanks to our supporters: National Care Forum, Learning Disability England, The Care Provider Alliance, Association of Mental Health Providers and VODG.