Please note: This article discusses bereavement and suicide and may bring up difficult feelings. If you need support or a listening ear, please contact the TSA Support Line. If you If you think you need urgent crisis support, we want you to get the best support possible. Please contact the services listed at the end of this article.

NHS England has re-released the ‘Learning from Lives and Deaths (LeDeR)’ report after correcting data issues. The overall findings remain the same, that people with a learning disability and autistic people face significant health inequalities, including earlier and often preventable deaths.

The barriers highlighted in LeDeR – such as access to timely, appropriate healthcare, staff training, and reasonable adjustments – will be all too familiar to many in the TSC community, with common TSC challenges including autism and learning difficulties.

What the updated LeDeR report says

  • Earlier mortality. Adults with a learning disability die on average 19.5 years earlier than the general population. This rises to 26.8 years earlier for adults with severe learning disabilities. Around 40% of these early deaths have been shown to be preventable
  • Care delays and quality gaps. Over 1 in 3 people experienced delays and gaps in their care and 1 in 4 people’s care was judged by coroners to not have been satisfactory / was a key contributor to their death
  • Autistic adults. In a small sample of autistic adults without learning disabilities (127 people), suicide sadly accounted for 31.5% of their deaths, and 44.1% of adults who died early lived in the most deprived areas of the UK. The report cautions that these figures are based on limited numbers, but they reinforce concerns about access and support

What the TSA’s views on LeDeR is

From the TSA’s perspective, LeDeR’s updated findings show three urgent priorities:

  1. The desperate need for timely and preventative-based healthcare for complex needs. These issues demand proactive and coordinated care plans for all stages of a person’s life, including a quick escalation of care when things change
  2. Clear improvement needed in adjustments and specialist pathways. Communication differences, sensory needs and learning disabilities risk mean standard clinical environments may not always work well for some people in the TSC community. Things like flexible appointment formats and quiet waiting areas need to be an easily accessible priority with medical appointments, ensuring people remain engaged with their care
  3. Mental health and suicide prevention remain a massive priority. Despite the small data sample, the high percentage of suicide amongst autistic adults in the report reinforces the greater mental health support that is there before things go wrong. Crisis plans, smoother referral routes and connections to specialists who understand neurodivergent minds could be key to saving lives

Practical steps you can take now

  • Request reasonable adjustments from health and social care professionals. Something as simple as a quiet waiting room, longer appointments or more local care could make all the difference
  • If you’re waiting too long for care or unsure on your next steps, make sure to request referrals and chase up appointments. If your needs are not met or appointments are cancelled, contact Patient Advice and Liaison Services (PALS). The TSA Support Line might be able to help with this
  • ‘Check in’ with loved ones with TSC. It can be incredibly difficult to make sure all needs are met, so taking a step back and considering this can be a huge opportunity to double-check

In all of the above, you can refer to the LeDeR findings to highlight the importance of timely, appropriate care.

Finally, remember that the TSA is here for you. If you’re worried about your health, care, or mental wellbeing or worry about these factors for a loved one, do get in touch. We want to make sure that LeDeR leads to genuine change and that this is the point at which things improve.

Read the LeDeR report in full here.

The TSA Support Line can be contact through:

  • Freephone and WhatsApp: 0808 801 0700
  • Email: support@tuberous-sclerosis.org
  • Live webchat (click the blue chat button in the bottom right corner of our website when available)

Urgent crisis support services

The TSA Support Line is here for TSC-specific questions or for a listening ear. However, the TSA Support Line is not a crisis line. If you think you need urgent crisis support, we want you to get the best support possible. Please contact Samaritans (dial 116 123, 24 hours a day, 7 days or week) or one of these services:

Urgent medical attention and advice

In an emergency: please dial 999

Urgent medical attention: go to your nearest Accident and Emergency Department or ring your GP for an emergency GP appointment

Urgent medical advice: call NHS 24 by dialling 111 (if you are in Northern Ireland, please find your nearest out of hours service here)

Crisis support

  • Samaritans – 116 123, phoneline open 24 hours a day, 7 days a week
  • Crisis Text Line – 85258 (text), provides free, 24/7, high-quality text-based mental health support and crisis intervention. Free on all major mobile networks, for anyone in crisis anytime, anywhere