Welcome to the March edition of our newsletter. This month our engagement team are out and about talking with adults diagnosed with autism for our latest project - Adult Autism Pathways. Also, we are excited to share with you, our recently published report - 'I want it that way' about accessing information provided by GPs, dentists and pharmacies.
We are here to listen, so if you would like to share your own experience when visiting your GP, dentist or pharmacy, you can fill in a short form on our website - Feedback Centre (anonymously if you prefer).
World Autism Acceptance Week
The National Autism Society (NAS) Furness Branch is run by David Willis and Mike Stanton. David is autistic and an experienced NAS volunteer. Mike has an autistic son, has taught autistic children, and has recently stepped down from the NAS Board of Trustees.
Together, they have been rebuilding the branch, which closed down during Covid. They welcome autistic people, their parents, carers, and professionals who want to join them in providing peer-to-peer support, campaigning for autism acceptance, and helping to build a society that values autistic people.
As well as setting up a befriending group for autistic adults, they have also provided training in autism acceptance and understanding to volunteers and staff at Mind in Furness and have held a successful open day. They are currently working with Healthwatch Westmorland and furness on the Adult Autism Pathways project.
Coming up soon is World Autism Acceptance Week, running from 2nd to 8th April. NAS Furness Branch has a busy schedule of events including a keynote meeting, Talk About Autism at the Holiday Inn Express on 5th April as well as a family fun day and fundraising day with the Colour Walk for Autism on Walney on 7th April.
If you want to get involved call 07825 995173 or email [email protected]. You can keep up to date with their latest projects via Facebook and X/Twitter
If you have been diagnosed with autism as an adult or know somebody who has, we would like you to get involved with our latest project - Adult Autism Pathways. Email [email protected] or click the link below to find out more. Sharing your experience could help improve future services.
St John’s Hospice Access all Areas
On a sunny day in January our very own Engagement Officer Ollie, was invited by our friends and colleagues at Healthwatch Lancashire to carry out an Access Audit of St John’s Hospice which is located in Lancaster.
The purpose of this visit was to look at current accessibility, and if and where appropriate, to make recommendations on how this could be improved.
Two members of the local community kindly gave their time to join Healthwatch Lancashire. The team consisted of the lead, Sue Edwards, a wheelchair user, someone with a visual impairment and someone with a learning disability. This allowed for those with lived experience to be able to provide feedback directly from their perspective.
Ollie said:
“I was delighted to have been asked to work with colleagues from Healthwatch Lancashire to undertake an access audit of St John’s Hospice. Access is an area which I am passionate about to enable people with a range of impairments to be able to access services, which many people take for granted.”
We looked at areas including the car park and main hospice entrance, the reception area and wards, the café and toilets, as well as the chapel and gift shop, in order to determine where accessibility could be improved.
The team looked at how easy it was to navigate around the centre for those with mobility needs, how signage and information were displayed and how legible it was, if the centre was dementia friendly, what was in place for the deaf community and interpreter services, health and safety (where appropriate) and any other observations noted during the visit.
Understanding the lives of disabled people in Cumbria
Back on the 3rd December 2022, Healthwatch Cumbria announced its new project; ‘Disability Voices’. Since then, the team have met local communities all across the county, speaking to over 750 people either living with, working with or caring for someone with a disability. Now, we are very excited to publish the full report.
It was recognised at senior level throughout Cumbria that the voice of those living with a disability in Cumbria had gone ‘quiet’. As it is such an active and outspoken community, this was concerning. Therefore, as a result Healthwatch Cumbria decided to undertake an engagement project with the purpose of amplifying the voice of people living with disabilities in Cumbria.
We wanted to hear people’s own experiences of living with a disability. Including what daily life is like; the worries, frustrations and barriers. We wanted to discover if there has been any difference from life five years ago, to learn what a good life would look like for someone with a disability, and to hear what changes need to be made. With a wider aim of improving the lives of disabled people throughout Cumbria.
In total Healthwatch engaged with a total of 758 people across Cumbria. This was via 54 focus groups, 202 case study interviews (which recruited a total of 596 participants), an online survey (which had 155 responses) and 7 social media comments detailing personal experience.
We are very excited to announce that the full report, is now published on our website.
Manager Kate is proud to now be a Mental Health First Aider (MHFA)
Having completed a two-day course in January, Healthwatch Westmorland and Furness Manager Kate is now a recognised Mental Health First Aider.
Just like traditional physical First Aid training which teaches you to give initial help to an injured person before emergency services arrive, MHFA helps you recognise the signs that someone may be experiencing poor mental health and provide them with initial support and early intervention; practice active listening and empathy; have a conversation with improved mental health literacy around language and stigma; encourage a person to identify and access sources of professional help and other support.
These skills can also come in useful in looking after your own wellbeing too, recognising the importance of boundaries, and practicing self-care.
Kate said:
“There is still a stigma around mental health. We live in a fast-paced world where we’re all expected to multi-task, and it’s easy to end up working long hours and weekends, worrying about the cost of living, while juggling family commitments and the mental load. Even though so many of us are going through that it’s still hard for people to speak up and say that they’re struggling, and often hard for us to notice and listen.
“As someone who experiences anxiety myself, I want to contribute to a more open conversation around mental health, and be there for people in the same way that friends and colleagues have supported me in the past.
‘Communication: I want it that way’ report is now HERE!
The engagement for Healthwatch Westmorland and Furness (HWWaF) ‘Communication: I want it that way’ project ran from 14th August 2023 until 7th October 2023, and in total 119 people shared their experiences and feedback with Healthwatch. This project aimed to explore how accessible the information and advice provided by GPs, dentists and pharmacies, (particularly about those living with impairments).
You can view the full report HERE.
Access is such a wide and varied topic, so it was decided that HWWaF would focus on just one element of accessibility – patients access to information and guidance. Therefore, the aim of this project was to explore how accessible the information and advice provided by GPs, dentists and pharmacies is to those living with impairments. As well as, asking carers, personal assistants and parents of disabled people about their experiences of communicating with GPs, dentists and pharmacies.
Some of the findings from the project include:
- The initial appointment is usually via telephone these days especially to triage and then maybe in-person appointment might be arranged as a follow up if necessary. But the preferred appointment method would be to have the initial appointment in-person.
- GP websites are regarded as more accessible than dentist or pharmacy websites.
- Often at appointments people feel that they get the time they needed to discuss the medical issue with the medical practitioner, however, for most people this does not happen at every appointment.
- Overall GPs are better at asking their patients their communication preferences than dentists or pharmacies. The preferred methods of contact highlighted were by email, telephone and text message.
*NEW FEATURE: Signpost Spotlight*
Highlighting some of the amazing people we work with.
Hi, I am Daniella and I am a volunteer at Team Autism CIC.
After struggling to get my GP to put me on the waiting list for an autism assessment and then finally being diagnosed, I was shocked at the lack of support for autistic adults without a learning disability.
I decided to write a course so that autistic adults could learn more about their condition. 'Autism - It's Part of Me’ covers the basics of autism and how it can present and offers a few lived experience coping strategies.
Susan (My mum, founder and director of Team Autism CIC) found that when adults without learning disabilities are diagnosed, there is little advice or support for their families. Because of this, Susan created a further course to help families understand autism and help maintain good relationships. For this course ‘Autism – It’s Part of Them’, myself and other autistic volunteers shared our lived experiences, both good and bad, from our perspective, whilst Susan shared her point of view as a mother. As part of this course, we have a visual and audio autism simulator for people to experience what life is like as an autistic adult.
We run various lunch clubs across the North and West of Cumbria including Eden, both for people with a formal diagnosis and those who are awaiting diagnosis. We also enjoy zoom quizzes and InfoChats.
If you would like more information about Team Autism please call or text Susan on 07748350587 or email [email protected]. Visit our website at www.teamautism.co.uk or our Facebook page.
