September and October 2023

The carer support group at Wednesfield Library is led by the carer support team for Wolverhampton and runs on the last Tuesday of every month, 11.30am – 1pm. Our involvement colleague attended the group in October to hear from attendees and learn more about the team and the support they provide to carers of adults, which includes practical information, advice and guidance, carer’s assessments, carers training and signposting. The team have also recently taken over supporting young adults and received 14 referrals in just three weeks. 

During the group, we spoke to a woman with 10 years’ experience of working as a dementia carer. She shared that the hardest part of the job is handling the emotions of the family, and she advised that families need more education on dementia and need to be kept informed so that they know what to expect. She also spoke about her experience of being diagnosed with breast cancer and her treatment, as well as her struggles with financial abuse and housing issues. Our involvement colleague has sent her details of legal aid, Aspiring Futures for counselling services and The Haven following the conversation, and the carer support team is supporting her with housing applications.   

Another attendee spoke about his wife’s dementia and his struggles with managing her diabetes. He shared that his wife doesn’t know when she’s full, when she’s eaten and what she can / can’t have when her blood sugar levels are too high. He also shared that his wife binge eats due to suffering from anxiety and depression, which sends her blood sugar levels dangerously high. Although they see a dementia nurse and Admiral Nurse regularly, he feels that he needs more help with these situations. 

Another attendee shared concerns about a neighbour who has Alzheimer’s, as his family don’t live locally and he is suffering from falls and confusion regularly. He would like to do more to help him, but he is limited due to being a full-time carer himself, so our involvement colleague shared details of the Admiral Nurses, Black Country Voices and the Wolverhampton People Panels with him. 

These conversations have been added to the dementia insight tracker.  

The Crystal Gateway in Amblecote provides daytime support sessions for people diagnosed with dementia. It is a paid-for service that requires a social care assessment and a personal budget to attend. The sessions aim to provide a space of stimulation and activity for people living with dementia, and all required care and support can be provided by experienced care staff. The service can also offer outreach support sessions, delivering beneficial activity support in the person's own home. 

Our involvement colleague attended one of the support sessions to speak to a group of attendees about their experiences.  

The group shared that, at the beginning of the dementia journey, they were given a lot of information about the varying services and stages of dementia. They said that this can be overwhelming, adding that not all of the information was relevant to what they were going through at the time. They think it’s important for information and guidance to be given later after the dust has settled, so that the information can be reflected on properly. 

The group also raised some concerns about referrals. They shared that they were given conflicting information regarding referrals when ringing support services, and that some GPs and healthcare professionals don’t want to make referrals to those who need intervention. They informed our involvement colleague that there is a big difference between mental health and dementia treatment/service plans, with one carer sharing the stress they felt when they had to wait 34 weeks for their husband’s report to come through after he was diagnosed.  

They said that they would welcome the opportunity for information to be more readily accessible to help carers during the various stages of the dementia journey. 

The feedback from this conversation has been used by commissioners who are currently developing the ICS dementia strategy and were shared at the Black Country Integrated Care Board’s Dudley Place meeting. 

Our involvement colleagues attended a neurological support group at The Mary Stevens Hospice in Dudley, which enables attendees to continue their therapeutic journey. Those who attended the group had motor neurone disease, Parkinson’s disease and dementia. 

During the group, our colleagues heard from a nurse who shared that patients rely on the hospice for care navigation, support with communication, chasing appointments and general advocacy as there is no key point of contact. Many patients will return to the hospice following being discharged as they don’t know who is looking after them and they view Mary Stevens as a trusted, safe space. A retired nurse who now volunteers at the hospice was also in attendance. She shared that the hospice has a lack of volunteers and that more volunteers would help with activities and maintenance across the site.   

The nurse in charge explained that most of the therapeutic work Mary Stevens do is psychological and that there is a great need for more mental health services. They spend a great deal of time supporting people through their grief, as they cannot get the mental health support they need going through a GP.  

One man who has Parkinson’s disease shared his experiences with his carer. He struggles to get them to do helpful tasks for him, such as filling out a form or making some toast, saying that if it isn't on their checklist, they won't do it. He also added that the carers aren't allowed to catch patients if they fall. 

Another attendee spoke about their early diagnosis of Parkinson’s. He recounted going to his GP for an appointment following an operation to clear his heart valves. The GP said “you’ve got Parkinson’s, I can see it on your face”, referring to his vacant expression and inability to focus. He was frightened and went home not knowing what this meant. He decided that he wouldn’t go to the GP without someone to support him again. 

The information from this conversation will be included in our research for the dementia strategy. The hospice’s nurse in charge has been invited to the next Dudley People Panel and our involvement team have shared the Active Black Country Activity Finder with her. 

Green Square Accord provides affordable housing and care to help people live independently. They also provide personalised dementia care and support and run various dementia cafes across the Walsall area. These cafes provide a wellbeing opportunity for carers, which can include having a hand massage, having their nails painted, playing games or simply chatting. 

Our involvement colleague attended the dementia café at Aldridge Community Centre to speak to attendees about their experiences. 

One woman shared that there was no communication following her husband’s diagnosis. They go to the community centre three times a week to attend the dementia cafes and ballroom dancing as they used to be professional ballroom dancers. Another woman shared that her husband also has dementia and that while he can talk, he can’t put sentences together. She told our involvement colleague that they have had no support and that they attend the dementia cafes to get out of the house. 

A volunteer at the café lost her mother from dementia a few years ago. She was her carer until she had to go into a home. She didn’t know if she’d initially be able to attend the cafes, but she was and she decided to become a volunteer. She now helps with knitting, painting nails and serving the coffee. 

The dementia café and activities coordinator, who was employed to run the cafes, shared that it is the carers that need support and that a person is needed for when a carer is in crisis and cannot cope. She also shared that she referred a lady to an organisation that would enable her to have a couple of hours respite that the lady would need to fund. 

The insights from this conversation have been shared with commissioners for Walsall and Walsall Council and will be used to support the Integrated Care System dementia strategy.  

In October, we visited P3, a homelessness charity based in Wolverhampton. Their floating support team offers support to those impacted by cost of living and homelessness. They meet weekly to chat over a warm drink and to provide assistance and advice on housing matters, form-filling and benefits. They also deliver a range of workshops and invite guest speakers to connect with the community. 

On this occasion, they were joined by the Canal & River Trust who were asking attendees about different health initiatives they would like to see locally through the Active Black Country funding. The group were keen on organised walks, and other suggestions included kick boxing, yoga, chair exercise and mobility training. 

The group also spoke to our involvement colleague about mental health services, primary care access, cancer, diabetes and cost of living. 

Talking about mental health, the staff from P3 said that they would like to be able to make referrals to Talking Therapies as a lot of the people they see are unlikely to go to their GP for help. The group said that there is a massive gap in mental health services and that there is nowhere to go for support unless you are in full crisis. Some said that they used to attend a mental health coffee morning at St Leonard’s Church in Bilston, but this is no longer running. They stressed that more groups like this are needed to give people a space to talk. 

A Caribbean woman spoke about her family’s experience with cancer, as she had three siblings who had all been diagnosed. She also shared that she finds it difficult to communicate with the NHS, as her beliefs on God and healing don’t form part of the conversations had with medical professionals. Our involvement colleague spoke to her about the Black Breasts Matter project and the importance of checking and cultural competence in the NHS.  

The group also touched on cost of living, as they shared that it’s hard to eat healthily and have enough food with the higher costs. Many of them are now relying on food banks and community shops that help their money go further. Some of the attendees had diabetes and suggested that a guide on eating well for less would be helpful. 

Following this conversation, our involvement team have shared the insights received on mental health services with our commissioners and the Black Country Mental Health Trust, arranging a joint visit to continue the conversation on mental health. The feedback on cancer conversations has been discussed with our Black Breasts Matter representatives, who have hosted a promotional event at the Black Country Integrated Care Board to raise awareness of their messages for the community.  

Guru Nanak Gurdwara is a place of worship for the Sikh community and was the first of its kind to open in Wolverhampton in 1966. The Gurdwara is well attended and sees around 1000 people weekly. They provide free meals from a kitchen run by volunteers, and they hold classes such as yoga and community fun days. 

Once a year, a group from the Gurdwara make a trip to India where they work with a group of young people to educate them on drugs and alcohol to raise awareness and encourage positive life choices. They also sponsor a number of young people through education to support them to reach their aspirations.​ 

Our involvement colleague spoke to the Gurdwara’s president and education secretary to find out about the work they do and what we can do to improve our communications and engagement within the Asian community. They learnt that approximately 99 per cent of the Gurdwara community speak Punjabi as their first language. Many have learnt English over the years, but language remains a barrier when it comes to health. They shared that the community use translators if they need them when attending health appointments, but that letters create an additional challenge as they’re usually in English. This means they are left unread or are misunderstood, which ultimately leads to missed appointments and worsening health. 

They discussed vaccines and said that many Sikhs would have vaccinations if they were easier to access. Our involvement colleague mentioned the pop-up vaccination hubs that are available, but they were unaware of these. Vaccination hub flyers have now been shared with the Gurdwara in Punjabi for them to promote. 

They also acknowledged that trust in the NHS is low in their community, particularly after the COVID-19 pandemic. They recommended more attendance from NHS colleagues and the possibility of holding a health event to provide health checks, advice and promotion of local services.  

Overall, it was an insightful conversation that gave our involvement colleague a platform to share upcoming events that would be of interest to the Asian community, such as the upcoming 'Welcome to Wolverhampton' event. There have also been discussions to provide materials on nutrition and health in Punjabi for our involvement colleague’s next visit, which will be after the Gurdwara’s next trip to India. 

SUIT is the drug and alcohol service user involvement team in Wolverhampton. They support vulnerable adults in welfare and addiction recovery, and the team is run by staff and volunteers with lived experience who can inspire recovery. 

We spoke to one of SUIT’s experts by experience, who wants to help others recover from addiction and improve the experience of accessing healthcare services. He shared that he became dependent on drugs after leaving the army and that he avoided using NHS and police services when he needed them most because he felt that professionals looked down on him. He said that wearing a lanyard now has changed that, adding that he feels “seen” again.  

He has been clean for two years and some of his tips for recovering from drug addiction include starting afresh, blocking phone numbers and "deleting people from your life". He shared the importance of having a support network, joining groups and making friends to avoid feeling lonely. Exercise is also important for building confidence, routine and providing a purpose to get up every morning.​ His new routine includes a swim, run and weights before going to SUIT for 9am, which has improved his confidence, health and fitness. 

He is an advocate for raising awareness of what people with addictions go through, stressing that people recovering from addictions need people to talk to. He would like to see a 24-hour helpline and believes that decisions about services should be co-designed with people with lived experience. 

This conversation highlighted the invaluable support SUIT provides to those recovering from addiction, as well as the value and importance of listening to experts by experience. Our involvement colleague has invited SUIT to have a stall at the next Wolverhampton People Panel to promote the service.  

Our involvement colleague attended the Graiseley Family and Wellbeing Hub in Wolverhampton for LGBT Sparkle’s monthly face-to-face social group. LGBT Sparkle has been running for 18 months and is for people who identify as LGBTQ+. As well as their monthly face-to-face sessions, they also run weekly virtual groups. 

The group shared their experiences of hate crime, racism and living with disabilities, and the Hate Crime Lead for Wolverhampton was also in attendance to share insights into the reporting of hate crimes.  

The group shared that they are regularly victims of homophobic or racial hate crime. One of the most common settings for this is on the bus, with one attendee saying that she experiences racism on the bus nearly every day. She also described a time where the bus driver would regularly drive past her at the bus stop, which she felt was racial discrimination or discrimination against the fact that she had to walk with a walking aid. The founders of the group are a gay married couple who have had to move house six times due to homophobic hate crime. 

Although the group spoke openly about being victims of hate crime, none of them had ever reported a crime despite being aware that they should be reported. The Hate Crime Lead for Wolverhampton shared that the number of reported crimes is low. He advised that the attendees should always report a crime so that the police and council have a real picture of the problem and can target specific areas, such as buses.  

Our involvement colleague was invited to attend a hate crime awareness walk to continue the conversation and the group recommended the need for more inclusivity across the partnership and the One Wolverhampton Engagement Network. This included providing documents in accessible formats, such as easy read. 

We attended Christ Church Tettenhall Wood for a dementia carer support group. Originally set up by a group of men that were supporting their wives with dementia, it is now a regular session that takes place on the first Thursday of every month for people who care for those with dementia or Alzheimer’s. 

The attendees shared their experiences on various topics, including access, pharmacy services, living well, care navigation, end of life and mental health. 

One attendee who is a full-time carer for his parents said that he felt his mother’s vascular dementia deteriorated following diagnosis as they weren’t signposted or advised on what to do next or where to go for support. They did however describe the Alzheimer’s Association as “brilliant’ and said that contacting the Admiral Nurses was the best thing they’ve ever done. Many of the attendees had positive feedback on Admiral Nurses and their services. 

The negative experiences of the group were very similar. They shared the effect caring has on their mental health, the feeling of dread and shock after diagnosis, the overwhelming amount of information, the difficulty accessing support services and the lack of empathy from professionals.  

One attendee shared their issues with care navigation. His wife required dressings following a fall, but they were signposted to four different services (their GP, district nurses, and two walk-in centres) before being told that it should have been done by their GP to begin with. Another attendee raised his experience when his mother fell down the stairs and developed a sore. It led to some difficult conversations regarding what could happen next, with the family preparing for the worst. She was in a hospital corridor all night and when the doctor called in the morning, they were told that there was nothing wrong. He described it as the worst day of his life. He raised a PALS investigation and his mother sadly passed away two weeks later. 

The group also raised issues on unreliable pharmacy services and getting continence pads. They find it difficult to get in contact with the continence department, which results in them starting an order for pads 10 days in advance. It can be difficult to plan ahead, so they end up spending their own money when they should be able to get them for free. 

Our involvement colleague has added these insights to our dementia strategy document. They have been invited back to the group and have shared information on Time2Talk for the issues raised. 

Help at the Hub is coordinated by the City of Wolverhampton Council, bringing together a range of services and organisations to offer information, advice and guidance to residents of Wolverhampton through the cost-of-living crisis. 

We attended Help at the Hub’s open day at The Institute in Tettenhall to speak to attendees with Healthwatch Wolverhampton. 

Many of the attendees had a lot of praise for the NHS and were happy with the services they received. Our involvement colleague spoke to an elderly man who had recently had an operation on his prostate at New Cross Hospital. His operation was over within a couple of hours and he was discharged the next day – he couldn’t praise the hospital enough. He did express that he would like questions about a patient’s mobility and support network to be asked more directly and that staff should be asking questions about cleaning. He is not mobile enough to clean his own home and can’t afford to pay someone to help him, and it’s these kinds of issues that can impact health.  

Another attendee shared concerns about the speed of organisational changes being made since the CCG became an Integrated Care Board. 

We had the opportunity to network with many different organisations, including Wolves Foundation, Wolverhampton College, Compton Care, Warmer Homes, P3, Admiral Nurses, Alzheimer's Society, SUIT, Public Protect and Wolverhampton Homes. 

Insights from these conversations have been shared with the engagement network. 

On Wednesday 4 October, our involvement colleague attended the Community Engagement Centre Dementia Café in Ford Street, Pleck. The café is held every Wednesday from 2pm to 4pm to give carers an opportunity to take a break and have some fun. They can play bowls or speak to a professional about any issues. 

Our involvement colleague spoke to a group of 12 attendees who shared their experiences of living with/caring for someone with dementia. 

One of the main points raised by the group was the lack of information and signposting after a dementia diagnosis, which they have found particularly difficult with GPs. One woman shared that she didn’t know where to get help and support and that she found being a carer isolating. Another woman, whose mother had been diagnosed with dementia and has falls, said that they have had no support or information about what to expect. 

The group also shared a lot of personal experiences about how dementia has impacted their lives. One attendee, who comes to the group for support, explained that her marriage broke down after being diagnosed with dementia and that she had to leave her home and move into a flat. She is now dealing with antisocial behaviour from one of her neighbours and feels frightened and alone. She also raised her struggles completing online forms for an upcoming operation due to her dementia. Another attendee shared that she still has anxiety after her husband sadly died of dementia. Others in the group said that they have to rely on friends and family to help, but it isn’t always possible for everyone. 

The feedback from this conversation has been shared with commissioners for Walsall and Walsall Council. Their feedback will also provide informed insights for the Integrated Care System dementia strategy.  

Me, Myself and I is a support group based in Dudley that enables carers of people living with dementia to have some fun. Their aim is to give carers a space to enjoy themselves, maintain good mental health and reduce isolation and loneliness. The group runs two monthly sessions in two different locations, and they are led by volunteers with support from Dudley MBC, the Black Country Living Museum and The Stourbridge Glass Museum. 

Our involvement colleague attended one of their groups to speak to the attendees about their experiences. 

The biggest insight the group shared was the need for improvements in dementia training and development so that both patients and carers can be supported throughout the dementia journey. They raised that the training is not person-centred and doesn’t always involve the patient and carer together, and they suggested that implementing a three-part training method that allows the patient and carer to be trained separately and then together would provide a more bespoke approach and benefit all involved.  

They shared that the lack of suitable training has caused stress to those in varying stages of the dementia journey, and that having suitable training, advice, information and guidance would help assure carers that they are doing the right thing to best support those that need them. 

The feedback from this conversation has been invaluable in shaping the ICS dementia strategy. The group has been ​given information on the Active Black Country Activity finder, which identifies a range of free activities across the Black Country, and the group’s volunteer coordinator has been signposted to join the Carers Alliance group at the Brett Young Carers Hub. 

Our Dudley involvement specialist has also been invited as a guest to attend the 10th Year Celebration for 'Me, Myself, & I' at the Black Country Living Museum on Monday 5 February. This will be an excellent opportunity to enhance the relationship between the Black Country Integrated Care Board and this group. 

Session details: 

Session one runs on the first Monday of every month from 10am-1pm at Roseland House Community Centre, 99 Watsons Green Road, Dudley, West Midlands, DY2 7LJ​. 

Session two runs on the third Friday of every month from 10am-1pm at Stourbridge Glass Museum, High Street, Wordsley, Stourbridge, West Midlands, DY8 4FB. 

The group is open to all carers.