Debate contribution: Public Petition: Ehlers-Danlos Syndrome — Diagnosis and Management
Debate contribution by Ms Connie Egan on .
- MLA
- Ms Connie Egan
- Party at the time
- Alliance Party
- Date
- 9 December 2024
- Type
- Debate contribution
- Business
- Assembly Business
- Heading
- Public Petition: Ehlers-Danlos Syndrome — Diagnosis and Management
- Assembly identifier
- Official Report component 4697934
Read the official Assembly record
Text
Thank you, Mr Speaker. It is an honour to be here today to present this petition on the diagnosis and management of Ehlers-Danlos syndromes (EDS) in Northern Ireland on behalf of members of Ehlers-Danlos Support UK, particularly its campaigners in Northern Ireland. Currently, the number of signatures on the petition exceeds 1,600. It is extremely heartening to see representatives of the Ehlers-Danlos Support UK community, some of whom have travelled from other nations in the UK for this moment, in the Public Gallery. I had the opportunity to meet them earlier. The material ask of the petition is to end the neglect of the diagnosis and management of people with most types of Ehlers-Danlos syndromes and hypermobility spectrum disorders (HSD) in Northern Ireland, which cause the utmost anxiety, distress and unnecessary pain. Ehlers-Danlos syndromes are genetic connective tissue disorders with body-wide symptoms that can be disabling, affecting all aspects of life. The most common type — hypermobile Ehlers-Danlos syndrome — is difficult to diagnose because there is no single test. That often leads to those who have EDS feeling ignored and unrecognised. I hope that this petition's being presented today in the Chamber gives you the recognition that you deserve. Mr Speaker, I ask that the petition be passed to the Minister of Health to draw his attention to the substantial gaps in knowledge on this condition in Northern Ireland that lead to common misdiagnosis and harmful consequences for those seeking medical care. We ask him to create a new care pathway, which falls within his remit and is happening elsewhere in the United Kingdom. Work has begun in England, for example, to create a primary care pathway for those presenting with symptoms. Early diagnosis is essential to give someone with EDS the best chance of having a good quality of life. The petition is part of the #EnoughIsEnough campaign. It aims to give a voice to those who have, for so long, been ignored. Ehlers-Danlos Support UK, which initiated the petition, has the vision of ensuring that, across the UK, people with EDS or HSD are connected, heard and supported and have equitable access to care. That is the core of the petition. Finally, I thank and pay tribute to my constituent Mandy McCreight. Mandy is a tireless advocate for those with EDS and disabilities. She volunteers her time to ensure that those living with the condition have support and access to the services that they need and know that they are not alone. There is little awareness or understanding in our society of EDS. I would have included myself in that until Mandy brought the issue to my attention. I thank her, the team at Ehlers-Danlos Support UK and everyone living with the condition for their advocacy and campaigning and for enabling me to bring the petition to the Assembly today.
473 words. Text as published by the Northern Ireland Assembly.
Assessment
Jev’s structured answers met the documented threshold for “not flagged”.
- Overall probability that the activity is being used to promote, exploit or escalate an identity-based controversy: 0.02 (flagging needs at least 0.70; at or below 0.30 is not flagged).
- None of the five culture-war criteria was met (each was below 0.60).
- Assessed as legitimate policy scrutiny (0.93).
- No identity-based framing was identified (1.00).
- Subject area: Disability (including neurodivergence and mental health), disabled people and disability or sickness benefits.
- The overall probability was at or below the not-flagging threshold.
This is an AI-generated assessment of the text, made against published criteria. It is not a finding of fact about the MLA or their intentions. The Assembly record itself is the fact.
Jev’s structured answers
| Question | Probability | Met? |
|---|---|---|
| Identity framing | 0.04 | No |
| Sectarian or communal antagonism | 0.01 | No |
| Cultural grievance politics | 0.02 | No |
| Dog-whistle messaging | 0.01 | No |
| Controversy escalation | 0.02 | No |
| Legitimate policy scrutiny | 0.93 | Yes |
| Overall judgement | 0.02 | At or below not-flagging threshold |
| Option | Probability |
|---|---|
| No identity-based framing (chosen) | 1.00 |
| Reports or questions it | 0.00 |
| Criticises or condemns it | 0.00 |
| Adopts it | 0.00 |
| Subject | Probability |
|---|---|
| Disability (including neurodivergence and mental health), disabled people and disability or sickness benefits | 1.00 |
| No identity-related subject | 0.00 |
| Flags, emblems, symbols, names and memorials | 0.00 |
| Parades, bonfires and commemorations | 0.00 |
| Irish language, Ulster-Scots and language policy | 0.00 |
Assessed 21 October 2026 at 11:40 UTC by jev-1.13.0 (requested as typesafe/jev) under rubric 2026.10-r9, methodology 1.9.
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