October 2023
New community conversations will be added here soon.
September 2023
Alz Café is a popular fortnightly dementia café held at Penn United Reformed Church that provides a space for people living with dementia and their carers to socialise and support one another. The café is free of charge and run by volunteers, many of whom are from health and care backgrounds.
Speaking to some of the group (who shared insights into the work and challenges of carers), we heard about the isolation that carers feel and how dementia cafés are a great way to socialise and support one another in difficult times. Some spoke of the guilt they feel at the thought of taking family members to care homes, and that they feel a responsibility to look after them at home, even if they are not physically able to deliver all aspects of their care, making themselves ill.
We heard that there is a gap in support, and that while patients are provided with information on diagnosis, they are then left to self-manage and don’t have a team to provide support unless they have a particularly complex case or if they are referred to an Admiral Nurse.
As well as more support being needed in the interim between diagnosis and towards end of life, they also raised that more guidance is needed on recognising signs of deterioration, what to do and when to reach out for more support.
The involvement team will use all insights gathered from this conversation to feed into the Black Country-wide Dementia Strategy refresh, to make recommendations on dementia services locally.
The Friendship Group is a social group run by The Friendship Café, a community interest company that provides a nurturing environment where isolated people can build relationships and confidence through conversation, activities, crafts and music.
Our involvement colleague joined a group of ladies knitting, crocheting and chatting, with some getting ready to display their crafts at a craft fair at Pelsall Community Centre.
One attendee, who is a wheelchair user, shared her experience of struggling to find jobs and volunteer work. She currently volunteers at a hospital once a week but would like to do more. Following the conversation, our involvement team contacted Black Country Healthcare NHS Foundation Trust who advised on volunteering opportunities and Just Straight Talk in Walsall have also offered employment advice and guidance.
Another lady shared her experience of hospital staff not keeping her up to date on her father’s care, adding that there needs to be a document provided to families with information on discharge.
She also spoke about her experience from when her mother was diagnosed with dementia with an incorrect diagnosis. This insight will help inform our involvement team’s work around Walsall’s dementia strategy and wider Integrated Care System dementia strategy when looking at the “diagnosing well” element of the strategy. As well as raising some of the challenges faced, she also shared that the Admiral Nurses were fantastic.
A diabetes presenter has been organised to attend the group at the organiser’s request, and the feedback on discharge resources and the other issues raised have been fed back to our colleagues in the out of hospital care workstream.
On Tuesday 19 September, our involvement colleague visited Bilal Academy. Bilal Academy provides religious, educational and health and wellbeing support to the community in Palfrey with a consultant coming in once a week to give sessions on mental health. The centre also runs activities such as coffee afternoons for the elderly, marital advice/counselling and a food bank.
Our involvement colleague was informed that a lot of the elderly in the area are widowed, and that the group Bilal Academy provides has given attendees more confidence and support to tackle social isolation and loneliness. We heard the story of one lady who had lost her husband to dementia and hadn’t talked, but with the support of the group, she has gradually started talking. There are also concerns about the safety of the area, with worries about knife crime and letting their children walk through the park from school.
A lot of the feedback received was related to GP services, with people sharing that they found it hard to get through to a GP at 8am to get an appointment and that they were only able to discuss one issue per appointment. There was confusion around where to go for holiday vaccinations, as one lady was directed to three different places, and we also heard about issues with a local pharmacy following a change of management.
The visit was very insightful, with recommendations being given on how we can improve our flu campaign material by sharing videos in different languages and making it more accessible and relatable to different communities. This feedback has been shared with our communications team.
The group was invited to the local People Panel to continue their discussions on what matters to them, and information was passed on to our Time2Talk service and the head of pharmacy around some of the other issues raised.
During September, NHS England worked with a local organisation, International Health, to host a series of community events aimed at increasing health literacy among parents and families in Sandwell.
The events were a drop-in format and included free height and weight checks, as well as information on healthy eating, childhood immunisations and diabetes prevention and management.
Our involvement colleague joined them for a well-attended women’s group on Monday 18 September to listen to feedback and share resources and information on Time2Talk and community pharmacies.
The group raised their challenges around getting a GP appointment, with a couple of attendees also raising their experiences with delays obtaining blood test results and sick notes.
When considering moving to a different GP surgery due to the access difficulties, they explained that the possibility of a change in their quality of care prevents them. They also shared that there is a preference for continuity of care and for people to see the same doctor, particularly amongst elderly patients.
They feel that some pharmacists can be really helpful with advice, particularly older pharmacists who know the patients, but that newly qualified pharmacists are more likely to advise them to speak to their GP.
The conversation gave our involvement colleague an opportunity to raise awareness of the Time2Talk service, and to inform attendees of the option to contact Time2Talk with a direct connection to an interpreter if English isn’t their spoken language. They were also able to signpost attendees to other services they could use in the event of an urgent medical need if they are struggling to get a GP appointment.
The health checks carried out by International Health have been helpful for those in attendance, particularly the check for diabetes, as many of the ladies had blood sugar levels outside of the usual range.
The feedback raised during the session has been shared with the senior healthcare leaders responsible for primary care in Sandwell.
St Andrew’s Church is actively involved within its local community, offering a variety of services, including a shop, a community café, an arts and crafts group, a lunch club, youth and children’s activities, pastoral care, prayer initiatives and opportunities to learn more about the Christian faith.
Our involvement colleague attended the church’s community café on Monday 18 September. He spoke to a gentleman and his daughter about the experience he’s had following a glaucoma operation on his right eye.
They spoke about the challenges he’s faced getting a follow-up appointment after his initial check-ups and the stress this has caused to him and his family:
“He has put his life on hold as he is concerned that if he books any day trips or holidays and the appointment falls on those dates, he will be pushed to the back of the queue again".
"This is hard to see and watch on a daily basis, in fact, it is now having an effect on his health and wellbeing".
After several delays, the family contacted his regular optician who provided a next day appointment. They gave his eyes a thorough check and advised that he return every three months for his eyes to be monitored.
The involvement team have provided the family with details for Time2Talk and this insight will be invaluable to our elective care colleagues.
First Abide CIC are a Christian-based organisation focused on community outreach, engagement and supporting those in need. We attended their Health and Emotional Wellbeing Group which supports people through the Japanese healing model Kintsugi. This is inspired by the ancient Japanese Art of Kintsugi, which repairs broken pottery using a golden lacquer to highlight and honour breaks instead of hiding them.
The group shared the need for the NHS to provide more support around spirituality, and that clinical discussions should reflect the beliefs of the patient. They also raised that NHS communications referring to therapy need to be more compassionate.
We heard from a parent of a young adult with autism who shared that there aren’t any support groups for parents of adults with autism and that having a network in place for support would help. A mental health nurse raised that many people working in mental health require help themselves due to the pressure and high-risk situations they experience in their jobs, and that more needs to be done to support them.
Following the meeting, our involvement team have sent details for the Adults with Autism group and Aspiring Futures’ counselling service for women, children and young people. They have enquired about other autism support groups, and they have provided the group with advice on starting their own, including where they can go for guidance and potential funding.
The group runs on Fridays from 12.30pm - 2.30pm at Bingley Strengthening Families Hub, Wolverhampton. They also run a Wellbeing Walk on Friday mornings from 10.30am - 11.30am at Bantock Park (meeting at Bantock House).
On Friday 8 September, we revisited the Memory Café held at The Grand Theatre in Wolverhampton. The cafés are hosted on three Fridays each month and include professional entertainment and refreshments. They are a great opportunity for those living with dementia to experience the magic of theatre with their loved ones, carers and other people that can relate to their experiences.
When talking about their experiences, attendees noted that they were given lots of information, flyers and booklets during diagnosis, but that they had challenges accessing support once they were discharged from the memory assessment service. Others shared their difficulties in getting a diagnosis for their loved one, and several issues were shared around communication. This included a lack of empathy and sensitivity when the Do Not Resuscitate (DNR) form is explained to carers/family members and the need for more dementia-related messaging.
An overarching theme to the comments received was that more support is needed for carers and family members to help them process what’s going on and to provide them with information on the different stages of the dementia journey and the support services available.
During the visit, it was recommended for our involvement team to attend Precious Memories, a café attended by people with dementia from a Caribbean background. Our colleagues have since reached out to them to organise a visit.
Our mental health is just as important as our physical health. At some point in our lives, we may need support to maintain good mental health and wellbeing, so it is important that we work together to stay well and recognise when and how to access more formal support from the NHS. In this month's Feet on the Street, we gave ICB Board Members the opportunity to hear from local people on what they do to keep themselves mentally well and happy, where or how they would want to receive support or help, and what would make it easier for them to access that support.
It may be no surprise to most that, for the majority of people, what keeps them well isn't the clinical or medical input that the NHS is built to deliver. People’s mental wellbeing is kept well by all the other stuff that people do - the places they go, the people they see and the support that strong, resilient communities bring. We are lucky in the Black Country to have a Mental Health and Learning Disability Lead Provider who recognises this and the role our vibrant voluntary, community and social enterprise (VCSE) sector plays in creating stronger community connections.
Our Board discussed the insights that this video prompted for some time at the meeting, reflecting on the role that each place-based partnership plays in ensuring that local people are well connected. Members also recognised that, as one of the biggest employers locally, it’s important for us to ensure our workforce is supported to stay mentally well. The key role that GPs play was also discussed, as they are not only known as gatekeepers for healthcare, but also for the part they often play in supporting people emotionally with wider social concerns. There was a real hope to the conversations amongst Board Members, and an ambition to use the opportunity of integration and the presence of our lead provider to drive through improvements in this area for local people and communities.
You can watch the full video here.
A transcript of the video can be downloaded from our website here.
Thank you to everyone who featured in this Feet on the Street for sharing some sensitive, personal stories and feelings, and thank you to our Black Country Lead Provider, Black Country Healthcare NHS Trust, for listening to all the feedback we received and for using these views to shape your ongoing work.
To find out more about community groups and neighbourhood activities local to you, take a look at the online directory most relevant to you or contact your GP surgery and ask to speak to a Social Prescriber.
