Tag Archives: learning disability support

Hospital Carer Discharge Meeting – November Update 2025

Chaired by: Matthew McKenzie – Lived Experience Carer

Welcome to the November 2025 update of the Hosptial Carer discharge group. The Hospital Carer Discharge Group is a collaborative network chaired by lived-experience carer Matthew McKenzie, bringing together unpaid carers, carer-centre teams, hospital staff and local authority representatives to improve how carers are identified, supported and involved throughout a patient’s hospital journey.

The group provides a space to share updates from hospitals and carers’ organisations, highlight challenges in discharge processes, strengthen links between community and acute services, and promote consistent carer-focused practices such as using the Carers Hospital Discharge Toolkit, developing standard operating procedures, and raising staff awareness.

The November meeting focused updates from the South East London Carer Standard Operating Procedure pilot, improving carer identification, strengthening links between community and hospital services, and practical challenges in engaging hospital teams.

For those who don’t know, In the context of the Hospital Carer Discharge an SOP is a step-by-step, structured process that hospital staff follow to ensure unpaid carers are identified, informed, supported and included consistently during a patient’s hospital stay and discharge.

It usually outlines:

  • How to record, communicate and follow up on carer involvement
  • Who is responsible at each stage (nurses, discharge teams, carer services)
  • What actions must be taken (e.g., asking about caring roles, sharing information, making referrals)
  • When these actions should happen (admission, treatment phase, discharge planning)

Who Attended

The session was well attended by a mix of carers, hospital representatives, and carer-centre staff, including:

Carer representatives

  • Matthew McKenzie – Chair; lived experience mental health carer; Carers UK, Carers Trust & NHS England Citizens Advisory Group volunteer.
  • Caroline – Lewisham carer, Healthwatch Lewisham member & Patient Experience Committee representative.
  • Various peer supporters, carers involved in local networks and PPGs.

Carer support organisations

  • Carers Hub Lambeth
  • Tower Hamlets Carer Centre
  • Wandsworth Carer Centre
  • North Central London Carers Support Project

Apologies

  • Sutton Carers Centre
  • Richmond Carers Centre
  • Greenwich Carers Centre
  • Harrow Carers Centre
  • Bromley Well
  • IMAGO – Lewisham carers Centre
  • Bexley Carers Support
  • Involve Kent

Hospitals & NHS staff

  • Queen Elizabeth Hospital (Lewisham & Greenwich NHS Trust)
  • Public Service Consultants (PSC)
  • Bromley, Lambeth, Lewisham, Greenwich council leads (mentioned in discussion)
  • St George’s Hospital (GESH) – references to staff

Meeting Overview

  • The growing importance of carer involvement in hospitals, especially with mental health pressures and changes to the Mental Health Act.
  • The group’s purpose: sharing updates, strengthening links between carers and hospitals, and improving the implementation of the Carers Hospital Discharge Toolkit.

Key Presentation – Update on the South East London Carer SOP Pilot

Speaker: Public Service Consultants (PSC)

The major portion of the meeting focused on the pilot testing of a new 11-step Standard Operating Procedure for identifying and supporting unpaid carers across hospitals in South East London.

🔹 Hospitals involved in the SOP pilot

  1. King’s College Hospital – Acute Medicine ward
  2. University Hospital Lewisham – Hawthorne (older patients) and Alder (specialty medicine) wards
  3. Princess Royal University Hospital (Bromley) – Frailty Unit via Transfer of Care Hub

🔹 Key outcomes

  • King’s College Hospital saw the strongest progress.
    • Nurses proactively engaged unpaid carers.
    • All leaflets and materials were distributed within weeks.
    • Carer details (with consent) were passed to Lambeth Carers Hub.
    • Nursing staff requested feedback loops to see the impact of referrals.
  • Lewisham Hospital
    • Progress slower initially; improved after site visits.
    • Ward managers highly supportive and embedding SOP practices.
    • Lewisham Council exploring funding for an in-hospital carers support team.
  • Princess Royal (Bromley)
    • SOP and leaflets now shared with the frailty unit.
    • Council to continue taking work forward.

🔹 Overall reflections

  • Hospitals still experience heavy winter pressures and staff capacity issues.
  • Engagement differs widely between NHS trusts.
  • Many ward teams had never seen the London Carers Toolkit, indicating a need for simplification.
  • Councils intend to continue cross-borough meetings after PSC’s involvement ends.

Issues & Discussion Points

1. Gaps in consistency across hospital sites

  • Queen Elizabeth Hospital (QEH) had not been part of the pilot, they have requested to be included
  • Staff expressed interest in adopting SOP materials and joining future rollout.

2. Carer diversity and training needs

Caroline highlighted the need for:

  • Training reflecting different care needs: LD, dementia, mental health, elderly carers.
  • Cultural diversity considerations in how carers interact with hospital teams.
  • Better alignment with Lewisham & Greenwich’s Compassion in Care programme.

3. Current SOP scope limitations

  • SOP starts at the ward stage, but carers need involvement pre-admission and post-discharge.
  • Best practice from NICE and the national toolkit emphasises whole-journey support.

4. Hospital culture & resistance

Carer-centre staff described feeling:

  • Like a “hindrance” in MDT or discharge meetings
  • Sometimes unwelcome or blocked from engaging on wards
  • Fighting clinical priorities vs. carer rights
  • Still needing major awareness-raising to reduce resistance

A carer noted power imbalances and the risk that carers are seen as “barriers to discharge” rather than essential partners.


Updates from Carer Centres & Hospital Teams

Carers Hub Lambeth

  • Significant increase in referrals, especially from King’s.
  • Engagement seems weaker at Guy’s & St Thomas’, it looks to be still pushing for a stronger carers strategy there, but hopeful the strategy should pick up.
  • Working with ward rounds and direct conversations with carers.

North Central London Carers Project

Working across 8 hospital sites, possilbly

  • Royal Free Hospital
  • Barnet Hospital
  • North Middlesex Hospital
  • Chase Farm Hospital
  • The Whittington Hospital
  • University College Hospital
  • St Pancras Rehabilitation (Camden and West London)
  • Community Central London Trust 
  • North London Foundation Trust (Mental Health)

Updates include:

  • A hospital “menu” to track progress across the toolkit (training, comms, discharge planning).
  • Embedding carers into induction programmes.
  • Co-authoring discharge documentation at St Pancras Rehab Centre with dedicated “carer sections”.
  • Upcoming use of Cerner electronic records system to automatically flag carers.

Tower Hamlets Carer Centre

Carer representative based at Royal London Hospital (east London)

Challenges include:

  • Slow referrals & reliance on staff awareness
  • Some carers only identified at crisis stage
  • Need to expand the carers passport across Royal London
  • Hackney pilot ends in March concerns about future funding

Wandsworth Carer Centre / St George’s

SONY DSC
  • Developing carer awareness training with Patient Experience Team
  • Growth in referrals after training sessions, though staff forget over time
  • Plan to expand ward coverage
  • As chair I shared St George’s new Carers Charter as a tool for accountability

Carer-Led Developments in Primary Care

A group of Lewisham unpaid carers has begun major work with GP practices, including:

  • Creating a PCN-wide carers information pack
  • Ensuring carer champions in GP surgeries
  • Working with pharmacies to distribute information
  • Improving identification on GP systems
  • Exploring alignment with Lewisham’s new Carers Action Plan

Plans for the Future

  • More invitations to NHS carer strategy leads
  • Sharing SOP materials with non-pilot hospitals where possible.
  • Matthew to link contacts across councils and hospitals for ongoing monitoring, being the following boroughs e.g.

Lewisham

  • Assistant Director – Adult Mental Health & Wellbeing
  • Joint Commissioner – Adult Mental Health & Wellbeing

Greenwich

  • Strategic Commissioning Lead
  • Commissioning Lead for Carers

Bromley

  • Assistant Director – Commissioning
  • Commissioning Officer

Bexley

  • Service Manager – Adult Social Care

Lambeth

  • Integrated Commissioning Manager – Adults and Health

Southwark

  • Strategic Programmes Manager
  • Commissioning Manager

Medium-term aims

  • Push for in-hospital carer support teams in Lewisham & Greenwich.
  • Expand training and embed carers into staff induction.
  • Improve pre-admission and discharge-planning pathways on carer identification and involvement for familes and carers.
  • Stronger collaboration between LD nurses, dementia teams, and carers services.

Longer-term aspirations

  • Greater consistency across trusts
  • Unified carers strategy within each hospital
  • A system where carers are routinely recognised, supported, and involved in decisions

Closing Remarks

As cchair I closed the meeting by thanking attendees and acknowledging the collective effort to improve carers’ experiences across London hospitals. I reaffirmed the importance of:

  • Making carers visible
  • Ensuring rights are upheld
  • Strengthening trust–carer relationships
  • Carrying learning into the new year

The next meeting will be scheduled in January, with hopes of smoother cross-hospital collaboration in 2024.

Learning Disability Week 2025: See, Support, Celebrate

By Matthew McKenzie (Carer advocate)

Understanding Learning Disability Week: A Time to See, Value, and Empower

Learning Disability Week is an annual event dedicated to raising awareness, promoting understanding, and challenging the stigma surrounding learning disabilities. Each year, this important week brings together individuals, families, carers, organizations, and communities to celebrate the achievements of people with learning disabilities and to advocate for a more inclusive society. The 2025 theme, “Do You See Me?”, calls on everyone to look beyond labels and truly recognize the unique individuals behind them, as well as the invaluable contributions of those who support them.

Before continuing reading my blog, you can watch the video version below

The Importance of Learning Disability Week

I feel Learning Disability week is a time to reflect on the progress made, the challenges that remain, and the collective responsibility we all share in creating a society where everyone is seen, heard, and valued. The week is proudly led by Mencap, a national charity at the forefront of learning disability advocacy, providing resources, easy-read guides, and campaigning materials to help spread the message far and wide.

Mencap works in partnership with local authorities, NHS trusts, and other charities such as Choice Support, Kids, Brandon Trust, and KeyRing. The campaign is also championed in the media by organizations like The Big Issue and supported by community groups, carers, and arts organizations. This collaborative approach ensures that the message of inclusion and empowerment reaches as many people as possible.

The Theme: “Do You See Me?”

Looking Beyond the Label

The 2025 theme, “Do You See Me?”, is a powerful call to action. It asks us to look beyond the diagnosis or label of “learning disability” and to see the person—their talents, ambitions, and unique voice. People with learning disabilities are artists, colleagues, friends, athletes, and advocates. They are individuals with dreams, skills, and stories to share.

Too often, society focuses on what people with learning disabilities cannot do, rather than celebrating what they can achieve. This year’s theme challenges us to change that narrative. It’s about recognizing the whole person and valuing their contributions in every aspect of life.

Recognizing Unpaid Carers

Behind many individuals with learning disabilities are unpaid carers being parents, siblings, young carers, friends, and loved ones—who provide essential support, often with little recognition. These carers play a vital role in the lives of those they support, helping them to navigate daily challenges, access services, and pursue their goals. Learning Disability Week is also a time to acknowledge and celebrate the dedication and resilience of these carers.

The Aims of Learning Disability Week

Celebrating Achievements

One of the central aims of Learning Disability Week is to celebrate the achievements of people with learning disabilities. Whether it’s excelling in the arts, sports, advocacy, or everyday life, these accomplishments deserve to be recognized and applauded. By sharing success stories, we can inspire others and challenge stereotypes.

Raising Awareness of Challenges

While there is much to celebrate, it’s also important to acknowledge the challenges that people with learning disabilities face. These can include barriers to education, employment, healthcare, and social inclusion. Learning Disability Week provides a platform to highlight these issues, share lived experiences, and advocate for change.

Sharing Good Practice and Improving Services

Learning Disability Week is an opportunity to share examples of good practice and to learn from one another. By highlighting innovative approaches and successful initiatives, we can help improve services and support for people with learning disabilities. This collaborative spirit is essential for driving progress and ensuring that everyone has the opportunity to thrive.

Campaigning for Equality and Inclusion

At its core, Learning Disability Week is about campaigning for equality and inclusion. It’s about challenging discrimination, breaking down barriers, and creating a society where everyone is treated with dignity and respect. This requires ongoing advocacy, partnership working, and a commitment to listening to the voices of people with learning disabilities and their carers.

The Power of Creativity and Self-Expression

Art as a Tool for Empowerment

Art and creativity play a vital role in self-expression, particularly for individuals with learning disabilities. Through painting, music, dance, storytelling, and poetry, people can communicate their thoughts, feelings, and experiences in powerful ways. Creative activities provide a platform for individuals to tell their stories, build confidence, and connect with others.

For many, art is not just a hobby, it’s a means of empowered communication. It allows people to express themselves on their own terms, to challenge stereotypes, and to showcase their talents. Arts organizations and community groups play a crucial role in providing opportunities for creative expression and in promoting the work of artists with learning disabilities.

Poetry and Storytelling

Poetry and storytelling are particularly powerful forms of self-expression. They allow individuals to explore themes that are important to them, to share their experiences, and to connect with others on a deep and personal level. By encouraging and supporting creative expression, we can help people with learning disabilities to find their voice and to be heard.

How to Get Involved

Celebrate Achievements

Take time during Learning Disability Week to celebrate the achievements of people with learning disabilities. Share stories, highlight successes, and recognize the contributions that individuals make to their families, communities, and society as a whole.

Share Resources and Raise Awareness

Use your voice and your platform to share resources, raise awareness, and challenge stigma. Whether it’s through social media, community events, or conversations with friends and colleagues, every action counts. Mencap and other organizations provide a wealth of resources, including easy-read guides and campaign materials, to help you get started.

Support Campaigns for Better Services

Support campaigns that advocate for better healthcare, education, and social services for people with learning disabilities. Organizations like Mencap and NHS trusts are working hard to raise awareness and improve services, but they need the support of the wider community to drive change.

Donate and Volunteer

If you are able, consider donating to organizations that support people with learning disabilities and their carers. Your contribution can help fund vital services, advocacy, and creative projects. Volunteering your time and skills is another valuable way to make a difference.

Attend Events and Webinars

Many local authorities, charities, and community groups organize events and webinars during Learning Disability Week. These provide opportunities to learn more, connect with others, and get involved in the campaign. Check out local listings and online resources to find events in your area.

Continue the Conversation

Learning Disability Week may only last for seven days, but the need for awareness, advocacy, and inclusion is ongoing. Even if you discover the campaign after the official week has ended, you can still play a part in celebrating the contributions of people with learning disabilities and supporting their rights.

The Role of Community and Collaboration

Working Together for Change

Creating a more inclusive society requires collaboration. Local authorities, NHS trusts, charities, community groups, carers, and individuals all have a role to play. By working together, sharing knowledge, and supporting one another, we can drive meaningful change.

The Importance of Visibility

Visibility is key to challenging stigma and promoting inclusion. When people with learning disabilities are seen and heard when their stories are shared and their achievements celebrated it helps to break down barriers and change perceptions. The “Do You See Me?” theme is a reminder that everyone deserves to be recognized and valued.

The Ongoing Journey Toward Inclusion

Building a Society Where Everyone Belongs

Learning Disability Week is a milestone in the ongoing journey toward a more inclusive society. It’s a time to reflect on how far we’ve come, to celebrate progress, and to renew our commitment to equality and inclusion. But the work doesn’t end when the week is over. It’s up to all of us to continue advocating for change, supporting one another, and building a world where everyone belongs.

The Power of Advocacy

Advocacy is at the heart of Learning Disability Week. Whether you are a person with a learning disability, a carer, a professional, or an ally, your voice matters. By speaking out, sharing your experiences, and supporting campaigns, you can help to create a society where everyone is seen, heard, and valued.

Resources and Further Information

Where to Find Support and Get Involved

If you want to learn more about Learning Disability Week, get involved in campaigns, or access resources, there are many organizations that can help:

Here’s your version with links included for each of the main organisations — ready for web, LinkedIn, or video descriptions:

Mencap: The leading charity behind Learning Disability Week, offering resources, guides, and campaign information.

Choice Support: https://www.choicesupport.org.uk, Kids: https://www.kids.org.uk, Brandon Trust: https://www.brandontrust.org, KeyRing: https://www.keyring.org — Charities working alongside Mencap to support people with learning disabilities.

Local Authorities and NHS Trusts: Many local councils (such as Royal Borough of Greenwich, Brighton & Hove City Council) and health services (such as CLCH NHS Trust) organise events and provide support during Learning Disability Week.

Community Groups and Arts Organisations: These groups including disability arts initiatives like DaDaFest and local community networks offer opportunities for creative expression and community involvement.

Check the official websites and social media channels of these organizations for the latest information, events, and resources.

Conclusion

Learning Disability Week is a powerful reminder of the importance of seeing, valuing, and empowering people with learning disabilities. It’s a time to celebrate achievements, raise awareness of challenges, and advocate for a more inclusive society. By supporting campaigns, sharing resources, and promoting creativity and self-expression, we can all play a part in building a world where everyone is seen, heard, and valued—not just during Learning Disability Week, but every day of the year.

Let’s continue to work together, challenge stigma, and create opportunities for everyone to shine. Happy Learning Disability Week 2025!