Down’s Syndrome

Jess Brown-Fuller Excerpts

Wednesday 19th March 2025 Westminster Hall

[Jess Brown-Fuller (Chichester) (LD)]

It is a pleasure to serve under your chairmanship, Mr Turner. I congratulate the right hon. Member for Beverley and Holderness (Graham Stuart) on securing this important and timely debate ahead of World Down Syndrome Day this Friday.

What a pleasure it was to take the opportunity before the debate, as we were slightly delayed, to chat to marvellous Millie, who is an incredible advocate for those who have been touched by Down syndrome.

In my constituency of Chichester we are fortunate to have an incredible charity, the Chichester and Arun Down Syndrome Support Group, which works tirelessly to fill the gaps left by failings in public service provision. Ahead of this debate, the charity highlighted to me many of the challenges that people with Down syndrome face, particularly in accessing the support they need throughout their education. One of its core initiatives as a charity is the bespoke schools outreach programme, which ensures that children with Down syndrome receive the tailored education they require. They require additional support throughout their education, yet many families struggle to obtain EHCPs from local authorities.

In West Sussex, the picture is stark: only 3.6% of EHCPs were issued within the statutory timeframe of 20 weeks in 2023, and the situation has not got much better. Those delays force children with Down syndrome to remain in unsuitable educational environments where their needs are not met, which hinders their opportunities. Most importantly, when an EHCP is issued, we need the accountability to see that that EHCP is delivered.

The charity also highlighted to me the cliff edge of support that people living with Down syndrome face at the age of 18, when they are no longer in an education provision. I was pleased to visit Together Our Community at its exciting new venue in Chichester, which is due to open next month. That will provide a space for TOC members and a public-facing café where adults with additional needs between the ages of 18 and 35 will have the chance to learn and develop essential skills. For people with Down syndrome, charitable organisations such as those provide vital support and services and give these incredible people the opportunity to thrive, not just survive.

The Down Syndrome Act recognised the needs of those living with Down syndrome and rightly acknowledged that public services must take those needs into account across health, social care, education and other local authority provisions. However, the Act must be properly resourced. The NHS website lists a range of specialists that a person with Down syndrome may need to see, including speech and language therapists, physiotherapists, opticians and occupational therapists. Yet local organisations consistently report a lack of those essential services, which undermines the opportunities for people with Down syndrome to live comfortably or independently. Three years on from Royal Assent, the Act is not supporting those who it was designed to support.

The Liberal Democrats have long called for all individuals with long-term conditions or disabilities to have access to a named doctor, which would shift care from the corridors of hospitals to local communities. That is especially crucial for people with Down syndrome, who not only have learning disabilities but are at a significantly higher risk of conditions such as dementia, seizures and leukaemia, as the hon. Member for Thurrock (Jen Craft) mentioned.

The impact of social care on people with Down syndrome cannot be overstated, which is why the Liberal Democrats are calling for a comprehensive overhaul of social care policy. While we welcome the cross-party commission to establish a long-term agreement on social care, we strongly believe that it can be concluded within one year, not three.

While the Down Syndrome Act was a step in the right direction, real change requires more than warm words; it demands proper funding and meaningful action. From healthcare and social care to employment and independent living, people with Down syndrome deserve better. As the right hon. Member for Beverley and Holderness stated, the guidance is where we are severely lacking at this moment in time. The Government must prioritise this issue, and we will continue to push for the improvements necessary to enhance quality of life for all.