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June 2024

At some point in our lives, most of us will be a carer. For some people caring for one or more family members or friends could be a long term, full-time role whilst for others it may be a short term or occasional role.  

Caring is vital and rewarding but for some people it will come at enormous personal cost. The Council and the NHS cannot solve all of the difficulties that carers experience, but life can be made a little easier by addressing some of the top priorities.

Staffordshire County Council has developed a Strategy that has been co-produced by the Council and Integrated Care Board and other partners, adult and young carers and their families, the public, and health and social care professionals. 

The Strategy recognises the extraordinary contribution made by carers and aims to ensure they can lead happier, healthier and more independent lives, in a society that values and supports them to maintain their caring role. 

Here is a link to the Strategy:

Our strategy for carers - Staffordshire County Council

May 2024

On Monday 29th April 2024, the government announced a consultation on changing how PIP (Personal Independence Payment) works. Asist's community advocacy project want to know what people think of this. We put together this information to help people understand the consultation and share their views with us.

What is PIP? PIP is a benefit to help with the extra costs disabled people face in life, whether they’re in work or not. The PIP assessment isn’t intended to assess someone’s capability to work. It’s to capture the extra costs disabled people face in life. It is not means tested, so disabled people can claim it regardless of income or whether they are working. To get PIP you need to have a longterm health condition or impairment that means you have difficulty doing everyday tasks or getting around. It has to have lasted for at least three months, and you need to think it will last at least another nine months. You also need to be 16 or over and below state pension age, and you do not need a formal diagnosis to be eligible for PIP. (Source: Scope) 

The PIP reform consultation is open until 22 July 2024 and you can fill in the online form here:

Modernising support for independent living: the health and disability green paper - GOV.UK (

You can also email your thoughts to:


April 2024

Staffordshire County Council has now established a Strategy Action Plan Delivery Team to address the 5 themes identified in the Living My Best Life Strategy 2023 to 2028. The Team has devised an Engagement Plan which will focus on :

1.  Make Staffordshire more open and inclusive by coordinating training and awareness for all.

2. Enable stronger partnerships to be built around the inclusion of disabled and neurodivergent people.

3. Action to be taken when disabled and neurodivergent people communicate their needs.

4. Better inform disabled and neurodivergent people and their carers to enable more control of their lives.

5.  The whole person's needs and aspirations and what they can do is considered.

Strategy Action Plan update (



March 2024 

From January 2024 the ASIST Coproduction team have been working with community groups across Staffordshire to record individuals’ experiences accessing healthcare services and the NHS. In addition, one of Staffordshire’s newly elected Members of Youth Parliament has developed and administered a survey which sought feedback from young people on the following questions:

  1. Do you feel that your needs are accommodated when in a healthcare service, when making and attending a GP appointment and making and attending a hospital appointment?

  2. Are any reasonable adjustments made for you when arranging or attending appointments and what measures can be put in place to help?

  3. Does physical accessibility need to be improved and if so how?

  4. What is a barrier for you in healthcare services?


February 2024

What is Community Organising?

When communities work together, the possibilities for positive change are endless. Community organising is the work of bringing people together to take action around their common concerns and overcome social injustice. Community organisers reach out and listen, connect and motivate people to build their collective power. When people are organised, communities get heard and power begins to shift creating real change for good.

Here is a link to a framework which provides a map of the process that starts with listening and it always aims to build power through action. It doesn't always follow a neat order and may involve repeating steps, but it reminds us of the journey required to achieve change for good:

The Community Organising Framework - Community Organisers (

January 2024

We all need a little bit of help sometimes be it with getting around, cleaning, preparing meals, personal care, DIY and gardening.

If you want to find an organisation in your area that can support you, try searching here on Staffordshire Connects.

There are a range of different organisations who can help you with personal and non personal needs. 

Here is the link to the providers of services in Staffordshire:

Staffordshire Connects | Living at Home

Do you live in Stoke on Trent and need practical care or support? If so Community Catalysts and their Small Good Stuff directory can help. 

Community Catalysts is a not-for-profit organisation working with Stoke-on-Trent City Council to develop micro-enterprises locally, offering care and support to older and disabled people, and is a key partner at the Communities Together Steering Group. 

Small Good Stuff does two things: 

  1. We link people who need care or support with local people who might help. 

People want care and support at times and in ways that suit them so we can put them in touch with local people because helping other local people is good for everyone and for communities. Here is the link to the directory of support providers in Stoke on Trent: 

Search the directory | Small Good Stuff

  1. We help small organisations that offer care or support. We provide them with information, publicity and access to a friendly network. 

You can list your organisation or group and we can provide a resource library of useful documents and links to other organisations through our Peer Network with information about directories and places where you can advertise your services, information about mentoring and support schemes aimed at small organisations like yours. 

In our experience very small organisations can offer great care and be imaginative and responsive but very small organisations can struggle to tell people what they can offer (they don’t have huge marketing budgets like the big guys). 

Please contact Alice on or 07435 943945 to make a plan. 



December 2023 

During the meeting of the Staffordshire Neurodiversity and Disability Partnership Board on the 7 November it was agreed that the next focus for feedback from groups and individuals should be on Healthcare access and physical accessibility issues. Prior to the next meeting of the Staffordshire Neurodiversity and Disability Partnership Board (February/March 2024) responses to the experiences and issues raised in the paper on Transport will be sought. A young expert by experience has been identified and will be invited to the next meeting of the Staffordshire Neurodiversity and Disability Partnership Board. It was also agreed at the meeting that the name of the Partnership Board should incorporate Neurodiversity and the Terms of Reference for the Board were also then finalised. Emily Donnachie the Oliver McGowan Project Manager for Staffordshire will be invited to attend the next meeting of the Board to provide an update on the progress of the project. 


November 2023

Staffordshire County Council is excited to share news about an important piece of work in the ongoing efforts to engage and empower the Staffordshire communities. The County Council has launched a comprehensive programme of community engagement with residents and businesses, which will inform a new Communities Strategy for Staffordshire, a vital part of the long-term vision of making the county innovative, ambitious, and sustainable. Staffordshire County Council has made substantial progress in recent years working with their partners, to empower our communities to achieve more.


This engagement exercise is open now until 31 January 2024.

Our Staffordshire Communities – tell us about your community and how we can all do our bit! | Let's Talk Staffordshire

October 2023 

In 2022 Staffordshire Council of Voluntary Youth Services (SCVYS) was asked to support the creation of a Staffordshire Co-production Promise for the Children and Families system, as well as creating a toolkit to support those people responsible for providing services to enable them to do co-production well. 

The Promise needed to include a local definition of co-production and some shared commitments to improve the experience of support as well as the outcomes from that support for families. 

The content of this Promise has been co-produced by local children, young people, parents, carers, adults and professionals from across the support system over the last 18 months. 

One small example of this is the logo you see on the Promise which was created by a young person from Lichfield District. 

Here is the link to the Co-production Promise: 

Staffordshire's Co-production Promise - SCVYS Staffordshire Council of Voluntary Youth Services (

Members of Youth Parliament (MYPs) represent young people across their local area. Staffordshire elects four MYPs who will represent the county until 2024. We have now identified one of the MYPs who will be invited to attend the Staffordshire Disability Partnership Board to give a voice to disabled young people and contribute to the work of the Staffordshire Disability Partnership Board. 

September 2023

Work has now started to establish the Oliver McGowan training across Staffordshire. Oliver McGowan was a young man whose death shone a light on the need for health and social care staff to have better skills, knowledge and understanding of the needs of autistic people and people with a learning disability. We are in the process of identifying Train the Trainers and experts by experience who will act as trainers. In addition we are advertising the position of Oliver McGowan Training Coordinator. The first part of each tier of training is e-learning which is accessed here:

The Oliver McGowan Mandatory Training on Learning Disability and Autism - elearning for healthcare (

The Tier 1 training is for people who require a general awareness of the support autistic people and people with a learning disability may need. The Tier 1 training consists of a one hour session delivered online. The Tier 2 training consists of a full day session delivered in person and is for people who may need to provide care and support for autistic people or people with learning disabilities. The first phase  of the project aims to deliver 104 Tier 1 sessions across Staffordshire.


August 2023

You can help to shape the support for carers in Staffordshire by taking part in the survey being conducted by Staffordshire County Council and here is the link to the survey:

Carers Strategy Survey | Let's Talk Staffordshire

The survey focus is on over 18 year olds but young carers can get involved by contacting Staffordshire Together for Carers by email: 

or by telephone on 0300 303 0621

Staffordshire County Council have also recently completed a consultation on proposals to enhance the support for children with special needs in Staffordshire and here is the link to the outcomes from the consultation:

Improving Special Educational Needs and Disabilities support in Staffordshire - Staffordshire County Council

July 2023

At the Disability Partnership Board meeting on 10 July 5 experts by experience discussed their experiences using transport. All of their views and issues raised in group meetings have now been coordinated and a paper compiled for inclusion on this website. The paper has also been sent to the Disability Partnership Board chairperson with a view to service representatives being invited to the November meeting of the Disability Partnership Board meeting to address the issues.

An article has also been completed for inclusion in the August E School Bag with the aim of involving children and young people in the development of the County Council's Whole Life Disability Strategy.

June 2023

We scheduled 2 subgroup meetings for 20 and 21 June to discuss transport and accessibility issues in preparation for the July Disability Partnership Board meeting and our experts by experience, Andrea, Salwa, Sue, Bobby and Maq will present the issues raised during the subgroup meetings.

May 2023

During this month we have focussed our activities on producing short videos with experts by experience who have an autism diagnosis which have now been posted on the Disability Partnership Board website. Salwa talks about her experience being diagnosed in later life and Rowena talks about the value of volunteering and has an inspirational message to share.


April 2023

The Dementia Voice group met to discuss issues around transport which will be presented at the Disability Partnership Board meeting in July by one of the group’s experts by experience Maq Qureshi. The group also identified a national consultation webinar which also addressed the issues of transport and here is the link to the recording which features individuals discussing their issues with accessing transport :

March 2023

A sub-group meeting was held to prepare for the Disability Partnership Board meeting at which Andrea Scott and Brian Kokoruwe will present as experts by experience on sensory impairment issues and Salwa El-Raheb-Booth will discuss autism in relation to the key findings from the “Living my best Life” survey.


25 March 2023

“Living my best life”

A joint Disability and Neurodiversity plan for Staffordshire.

In December 2022 Staffordshire County Council sent out surveys to find out about the lives of disabled and neurodivergent people in Staffordshire.

Over 500 people have shared their responses so far. The surveys asked people to rate their quality of life and you can make a difference and contribute to the development of the plan at this website:

Help us develop a disability and neurodiversity strategy for Staffordshire - Staffordshire County Council

The key issues identified from the surveys are:

How can we encourage all organisations to better understand and act on making Staffordshire more open and inclusive?

How can we make sure people with lived experience have more of a say in partnerships between local organisations, people and local communities?

How do we help make sure everyone listens and is kind and thoughtful to people’s needs?

What are the most important things we need to make sure people are better informed and can live as independent a life as possible?

What needs to be in place to make sure that where needed support considers the whole person’s needs?

You can email us or call us to arrange a visit or to discuss your views

Mark Connolly : mobile 07483 155556 email:

Neil Ferneyhough: mobile 07483 161136 email:

February 2023

In preparation for the March Disability Partnership Board we have identified sensory impairments as a specific focus for the Board’s consideration and have enlisted the support and expertise of Staffordshire Sight Loss and dDeaflinks Staffordshire. Suzanne Roberts CEO of Staffordshire Sight Loss and Laura Thirlwall Manager of dDeaflinks Staffordshire have agreed to identify experts by experience to also attend the Disability Partnership Board meeting.


Meeting with Blast Autism Group- 03/08/2022

Today Asist met with the BLAST group (Burntwood & Lichfield Autism Support Together) at Chasewater Sailing Club We explained the role of an advocacy facilitator and spoke about what the REACH project entails.

We spoke to Blast group members, staff and volunteers who told us about the Blast Group and how it supports one hundred young people with autism or autism/learning disabilities.

They said with the young people’s family's their membership  is now close to four hundred members.


This is some of the feedback I received on today's visit.

"I feel that the local authority is not meeting the legal requirements of young people with autism and that deadlines are not being met for EHCP plans or people being assessed at an early enough age."

"Young people need support from an earlier age and we need to get it right from early years as by the time a child has moved through primary to secondary school, they might have completely lost faith in education due to the lack of support."

"Assessments such as ASD Assessments and EHCP Planning assessments are taking too long which then can impact upon the young person and their self-esteem and mental health – This then has an impact upon the whole family as a lot of carers feel stressed due to seeing their siblings struggling within an educational setting that does not meet their needs."

"Carers can spend a lot of their time preparing for these assessments as well as trying to support their children who are struggling within a school system that may not meet their needs."

"Commissioners need to come and speak to families and young people and get an understanding of how difficult it can be to access the right support for a young person and their family from assessment to getting the right support within education and then via EHCP plans."

"There is still a lack of understanding of autism amongst teachers and teaching staff and there needs to be more intensive training related to autism for commissioners and staff who work within the local authority and who make important decisions around budgets for young people.


"Many parents with an autistic child feel unhappy and angry as not even the legal and statutory obligations are being met for young people."

"Some colleges are refusing people with an EHCP plan which means that young people with autism are not getting access to the same opportunities."

 "There is a lack of understanding of young people's support needs which then impacts upon their education and which then impacts upon their mental health."

"I didn't have had a proper review for two years which led to my 1:1 support being taken away. I felt  annoyed and frustrated, there was no explanation of why this happened, and I ran out of school because of this. It is important that my 1:1 worker is around so I have someone to talk to if I need to when I need support.”

“There is a lack of communication within schools and even though some support is in place most of the time it’s not the right support.”


“There needs to be more support for young people regarding their mental health, they need to have a voice as sometimes they are not listened to, there needs to be nicer places for young people to go to and more activities for them to do. It is unacceptable that young people are still experiencing what I went through, parents have to deal with all the screaming and shouting at home when young people have a meltdown due to the lack of support or understanding at school, this lack of support then affects young people’s mental health which can then lead to social isolation.”

It was great to meet everyone today and thanks for all your feedback.

Written by Mark C 


What have we been up to? 

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