WHAT WE DO
Projects
At Parent & Carer Alliance, we regularly participate in exciting projects that are aimed at improving the lives of disabled children. We participate in valuable research to help make lived experience visible and ensure that our communities collective views and experiences are heard loud and clear. Together, we can make a difference!
Understanding Parent Blame
Leeds University Conference
Understanding Parent Blame
Monday the 15th of September
Families who have lived through parent blame already know why this work is so important.
The challenge is helping professionals understand it too.
Because the deepest learning does not come from textbooks.
It does not come from lectures.
It comes from walking alongside families.
It comes from seeing the barriers.
And it comes from recognising what families already know – how lives can be better, how lives can
be transformed – if only we are supported, not blamed.
But too often, that is not the case.
Too often, interventions fail – not because of parents – but because they are poorly designed,
impossible to access or never followed through.
And when they fail, the finger of blame points straight back at families.
Help us drive essential policy change.
Please join us and download this letter to send to your MP
If you would like to download the poster to share
Understanding Parent Blame Poster
Please also sign the petition. Once approved, it will be shared here.
Open Letter to Bridget Phillipson
Lucy Fullard CEO of the Parent and Carer Alliance has written an open letter to the Secretary of State for Education.
"I am writing to you regarding the urgent need to protect and strengthen the rights of disabled children and young people within our education system. As families already facing extraordinary challenges, we are alarmed by the direction of these reforms, which appear to weaken essential legal protections while failing to recognise the lived experiences of those most affected.
We have fought too long and too hard for our children’s rights to be dismantled now. We urge the Government to work with families, not against us, to build a system that values inclusion, protects legal rights, and genuinely meets the needs of every child.
We would welcome the opportunity to engage further with your department on how these reforms can support, rather than harm, disabled children."
You can download a copy of the letter by clicking the link below.
Carers Week 2025 Report
The Parent and Carer Alliance C.I.C. have prepared this report for Carers Week, incorporating the voices and opinions of Parent Carers.
Please read the report here Carers Week Report
Continence Product Supplies
"Inaccessible, unacceptable and unaccountable: the
provision of paediatric continence supplies in England, Wales and Scotland" states a study led by Leeds University and supported by Lucy Fullard CEO of the Parent and Carer Alliance.
This research report concerns the way that the health services in England, Scotland and
Wales respond to the continence care needs of disabled children. Its particular focus is on
the provision of containment products (such as nappies, pads and ‘pull ups’). The research
involved surveys of parents of disabled children, the making of freedom of information requests and website searches.
You can download a copy of the report here.
If you would like to discuss the report and see how Parent and Carer Alliance may be able to help you please email us Info@parentandcareralliance.org.uk
Luke Clements
Luke Clements is the Cerebra Professor of Law and Social Justice at the School of Law, Leeds University. Luke is also a solicitor with Scott-Moncrieff & Associates Ltd.
Luke’s academic research and litigation experience is primarily concerned with the rights of people who experience social exclusion, including disabled people and their carers.
He has helped draft and promote a number of Parliamentary Bills aimed at improving the rights of people experiencing social exclusion and in 2013 he was the Special Adviser to the Parliamentary Committee that scrutinised the draft Bill that resulted in the Care Act 2014.
The Parent and Carer Alliance is very grateful that Luke has kindly given his permission for us to use his work and available in our associates library.
Disability Needs Assessment
ParenrtandCarerAlliance was commissioned by Professor Luke Clements and the School of Law’s Legal Entitlements & Problem-Solving (LEaP) Project at the University of Leeds, to undertake a consultation into Disability Needs Assessments.
The aim was to utilise the experiences and expertise of Parent Carers and their families, and to incorporate their ideas, as to how a needs assessment could be done more effectively and result in better support for families whose children have additional needs. This was sent out for consultation with our community and with that of other parent carer support groups around the country.
We adapted the assessment following this consultation and this version, as well as parent carer recommendations for guidance for social workers, was presented to national statutory sector leaders for their views to be included, and is now being used by PCA.
Examination of Fabricated or Induced Illness Cases
The Parent and Carer Alliance used its network of associates and service users to review cases of Fabricated and Induced illness in Gloucestershire.
In 2018 the PCA gained permission from its network of supporters to replay these lived experiences to the appropriate agencies in Gloucestershire.
A summary of these findings and the evidence provided to the Agencies is available through this link.
Discovering You Short Breaks
After a successful test and learn project funded through Barnwood Trust over an 8-month period, the Alliance is proud to say that the Short Breaks Project continues and grows. The PCA is now offering many events throughout the year designed to be accessible to all.
Search our events and see what might suit you.