Newsletter June 2024 - 18/09/2024 

Dear  

Welcome to the fifth edition of the West Yorkshire Voice Newsletter. The last couple of months have seen a new West Yorkshire Voice Coordinator come into post. Members of West Yorkshire Voice have shared their experiences of hospital access, care and treatment and generally what is most important to them in terms of health and care services.

In each newsletter, we will let you know about what is happening and ways to get involved in health and care across West Yorkshire. We will also share feedback about how people have been able to share their experiences and what has changed because of people getting involved and giving their feedback.

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New West Yorkshire Voice Coordinator

How your voice has helped

What's Next?

What have we been up to?

Opportunities to influence

Member Spotlights

Our new West Yorkshire Voice Coordinator, George, started in April 2024 and is excited to take things forward with West Yorkshire Voice. They have put together a short video introduction to themselves and their work with West Yorkshire Voice.

We spoke to 143 people across West Yorkshire. People shared their experiences of all types of end-of-life care services, from GP surgeries to hospitals, hospices, care homes and more. People gave examples of positive support and good practice and areas where support to communities could be improved. 

The experiences have been captured in the West Yorkshire End of Life Care report, which will feed into the West Yorkshire Integrated Care Board’s Palliative and end-of-life Care Programme Health Needs Assessment. 

We will create a plan with the people of West Yorkshire of how this will be delivered over the coming months and years to improve services and access to end-of-life care across West Yorkshire. We will share updates as things develop. 

[There is ongoing work to improve the accessibility of this report and this will be updated as soon as possible].

In our January Newsletter we asked for your thoughts on Hospital Access, Care and Treatment.

Thank you to everyone across West Yorkshire who provided responses and shared their thoughts and experiences. The responses to the survey and conversations that we had with people were used to develop a briefing paper to be considered alongside the formal board meeting papers and a paper presented by the West Yorkshire Association of Acute Trusts. This was to make sure that real experiences are being considered and are influencing decisions.

There were 5 key themes identified, and we made recommendations on these based on your feedback:

•  Communication

•  Coordination

•  Compassionate staff

•  Waiting times

•  Hospital discharge

The conversation at the meeting was useful and helped to highlight where things are working well and where improvements can be made. The insights we shared through the Hospital Briefing Paper, and recommendations made were discussed further at the West Yorkshire Association of Acute Trusts Committees in Common meeting and will be used to inform future planning and delivery. We hope to provide more detail on actions over the coming months.

The next West Yorkshire Integrated Care Board meeting will take place on Tuesday 25th June. We would like to highlight your experiences and what is important to the people of West Yorkshire at the meeting to help influence decisions that are made on your behalf.

We are asking what works well, what doesn't work well and what could be better about the healthcare you have accessed. 

You can let us know what you think by completing the survey below or getting in touch with George on via info@westyorkshirehealthwatch.co.uk, 07496403341 or 0113 898 0035. 

If you have any questions, queries or would like to be involved further you can get in touch on the contact details above.

Since being in post, George has been out and about across West Yorkshire meeting different groups and people. 

They have visited several voluntary sector events such as:

•  Health and Care Network in Bradford

•  People Helping People, Dewsbury and Mirfield in Kirklees

•  Mental Health Awareness Event in Leeds Kirkgate Market. 

•  Bradford Healthier Lives Forum

•  Calderdale Healthy Minds Forum

They have spoken to several different groups and organisations who have since become involved in West Yorkshire Voice. These organisations do fantastic work in the areas of support and advocacy for deaf individuals, people with learning disabilities, people with autism and ADHD, people seeking asylum, people experiencing homelessness, people experiencing mental health, visually impaired individuals and people with dementia.

West Yorkshire Voice has recently become involved in some work around inclusion health which has been focussing on supporting access to healthcare for those who face the largest health inequalities. 

On 14th May, we supported the Integrated Care Board (ICB) to run a community development day where we invited professionals from organisations supporting people and individuals from diverse communities to come and share their thoughts around how they might like to be involved. 

We discussed how people from certain communities who experience various barriers to accessing healthcare could hold the ICB to account. 

Next steps will involve engaging beyond professionals to people who may themselves want to be involved. If you are interested in getting involved in future events and conversations about this, please get in touch with George on via info@westyorkshirehealthwatch.co.uk, 07496403341 or 0113 898 0035.

We regularly share opportunities to influence that have been shared by those in health and care services looking to change and improve services.

Do you want to help improve Dentistry?

Healthwatch across West Yorkshire are looking for people to be involved in shaping the way that dental services are delivered across West Yorkshire.

Who Can Join?: dental patients, Dentists, GPs, parents, private dental users, people without an NHS dentist, educators, and community members.

What you’ll do: Engage with NHS managers, who will shed light on upcoming dentistry schemes in West Yorkshire. Give your feedback and help shape how the schemes are delivered to ensure they meet the needs of everyone in our community.

If you would like to join or find out more, please email or call the Healthwatch Kirklees team (who are leading on this work) on email info@healthwatchkirklees.co.uk or telephone 01924 450379.

Have you tried to order a repeat prescription from a GP surgery in Leeds in the last three months?

If yes, Healthwatch Leeds want to hear from you about your most recent experience.

If you have any questions or need any support completing this, please contact the Healthwatch Leeds team on info@healthwatchleeds.co.uk or telephone 0113 898 0035.

During Carers Week 2024 (10th to 16th June), Wakefield Council's Integrated Health and Care service partnered with the Carers Voice Network are hosting an event on 13th June to recognise the important role that unpaid carers play in our society.

As an unpaid carer your personal experiences and input will help them to improve ways to identify, assess and support unpaid carers in the future.

The event will be set up as an informal workshop with a chance to network and have your voice heard. Representatives from LiveWell, Tech Enabled Support, Alzheimer’s Society and Age UK Wakefield will be there to share info about the support they offer.

There will be some light refreshments available. The event is open to all unpaid carers who support an adult over 18 years old and those they care for. Please confirm your attendance by emailing adultsocialcare@wakefield.gov.uk. 

There is also the chance to feed in your voice via the Wakefield Council Unpaid Carers Survey, which closes on Friday 14 June 2024.

The University of Leeds and the NHS would like to hear from people who live with long term health conditions and/or their carers about their experience of support and treatment. They want to listen to people from different groups and communities and to those who may not usually get involved, to make services better for everyone.

They would like to hear from people who live in or have a GP surgery in one of the following areas of Leeds: Burmantofts, Harehills, Chapeltown and Richmond Hill, Seacroft, West Leeds - Farsley, Pudsey, Bramley and Calverley.

The person must also have more than of one of the following health conditions: Heart Disease, Diabetes, Chronic Kidney Disease and Mental health problems.

You can share your experience in a way that works for you and support will be provided if needed. If you or the person you care for meet all the criteria and can share your experience, a £25 gift voucher will be offered.

If you work for an organisation and can get a group of people together who meet the above criteria, please get in touch to discuss this further.

If you would like to join, please email or call the Healthwatch Leeds team on info@healthwatchleeds.co.uk or telephone 0113 898 0035.

Alzheimer's Society were involved in hosting this years' Dementia Action Week across different venues in Wakefield and Leeds. Below is a snapshot of some of the many events going on just in Wakefield and Leeds.

The Wakefield team launched the 'Dementia Life goes on' video at their local Dementia Road Show. The video features members of Alzheimer’s Society Wakefield ‘Voices Together’ Group sharing their experience of dementia. The aim was to support people going through a dementia diagnosis and to provide a useful training resource for health and care staff. For more information contact Katty.Keyhani@alzheimers.org.uk , Local Services Manager of Wakefield.

At The National Coal Mining Museum, professionals from many Wakefield area organisations came together to hear live presentations by People living with dementia and Carers.

In Leeds, organisations from Maecare Neighbourhood network, joined with Carers Leeds and Alzheimer’s Society to offer a social event, with information, support and advice available. Leeds Older Peoples Forum hosted a Dementia Action Week event where people with dementia gave speeches as part their involvement in the ‘Deep Group’. Dementia Friendly Horsforth and care company Right at Home Living Well, held a Showcase event with live entertainment alongside a structured events programme, including a “Lived Experience” talk with a carer.

Find support near you for Dementia.

One of our members wanted to highlight how important peer support has been to them for managing neurological disease known as Myalgic Encephalomyelitis (M.E.). They also wanted to raise awareness of some important changes in guidance that affect the M.E. community.

This member shared how debilitating this neurological can be which, according to NICE, over 250,000 people in the UK are also thought to suffer from. In 2021, NICE issued new guidance for the care of people with this complex illness for which there are no treatments. 25% of people with the illness fall into the severe category and are house/bed bound.

Kirklees and Calderdale Independent ME Support Group (KCIMESG) is a local support group based in Kirklees and Calderdale for people with M.E., and their carers and loved ones. KCIMESG welcomes you to join us and find friendship and support from others who understand and have experienced your difficulties, as well as information and validation.

In addition, Phoenix Rising is the largest and oldest online forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as M.E. and welcomes all people with the illness on to its forums.

The National Kidney Federation is the UK's largest kidney patient charity in the UK, run by kidney patients for kidney patients.

The National Home Dialysis Peer Support Service is a free service designed to assist individuals affected by kidney disease through the invaluable insight and guidance of experienced peers. It aims to support people on home dialysis, those considering shared care, home dialysis and their families and carers.

Patients, caregivers, or family members interested in this service can reach out via the NKF Helpline 0800 169 09 36, email helpline@kidney.org.uk, or by submitting a referral form. 

Units can also get involved and support via providing NKF materials: To order any materials free of charge materials please contact our NKF Helpline on 0800 169 09 36 or email helpline@kidney.org.uk.

For further information please contact the NKF Helpline on 0800 169 0936, email helpline@kidney.org.uk.

Following recent reviews into Maternity care at Shrewsbury and Telford Hospital, a new senior role called Maternity and Neonatal Independent Senior Advocate (ISA) has been introduced in a pilot scheme to support women and families in England.

This role was developed by NHS England working alongside people who have experienced adverse outcomes alongside NHS staff. Maternity and Neonatal Independent Senior Advocates help ensure the voices of women and families are listened to, heard and acted upon by their maternity and neonatal care providers when they have experienced an adverse outcome during their maternity and/or neonatal care.

The Maternity and Neonatal ISA for West Yorkshire and Harrogate is Rhona Mulvihill. You can make an online referral and promote this amongst your networks.   

Thank you for taking the time to read this edition of the newsletter. We welcome any feedback about how we can make this information more accessible and useful to you. 

If you'd like our West Yorkshire Voice Coordinator George to come speak to your group, organisation or network or you'd like to arrange an individual chat to share your experience, please contact George on via info@westyorkshirehealthwatch.co.uk, 07496403341 or 0113 898 0035.

We can also share your involvement opportunities, work and updates in our newsletter so please speak to us if you'd like to be included in a future edition.

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