THE Terminally Ill Adults Bill returns for another second reading in the Commons today. But the Equality Impact Assessment (EQIA) is dangerously poor.

Procedurally, the second reading is usually concerned with the principle of a Bill. But technical aspects of this Bill such as the quality of the EQIA are very relevant to the second reading because of the re-introduced nature of the Bill, which previously failed to become law and has been brought back.

The Bill includes measures for monitoring and reporting on equality impacts.

Potential adverse impacts on groups sharing protected characteristics including Deaf and Disabled people are too serious for a test and learn approach. The public expects better when it comes to assisted dying safeguards.

This Bill should not progress without a fit-for-purpose identification of risk.

Why does this matter?

1.  Safety is a priority concern among both supporters and opponents of the Bill.

The failure of the EQIA to adequately identify the adverse impacts and potential risks associated with this Bill is at odds with public expectations around parliamentary scrutiny on the safeguarding and protection of “vulnerable” people.

2. One main reason why the EQIA is so poor is because this is a Private Member’s Bill.

This EQIA has been compiled using available evidence from other jurisdictions, which it admits is not only limited but also cannot be directly transposed onto the situation in the UK which has different demographics and laws.

It states within the EQIA that engagement and consultation are not the responsibility of the government but of the sponsor of the Bill. Yet these are key components in fulfilling the public sector equality duty (section 149 of the Equality Act) where there is limited evidence.

The EQIA was not originally published until after committee stage, which means that even those potential risks it did identify were not available during development of the content of the Bill.

It was published two weeks before report stage which did not give deaf and disabled people’s organisations enough time to analyse it and lobby MPs about major gaps in it.

DDPOs believe that an independent Royal Commission or equivalent is essential as a precursor to legalisation.

3.  There are significant, major gaps within the EQIA.

The revised EQIA published on August 28 is an improvement on previous versions which were more concerned with ensuring equal access to the proposed Voluntary Dying Service than with identifying risk and evaluating possible mitigations.

There remain a dangerous number of omissions and the low-level approach to the EQIA is completely disproportionate to the gravity of potential adverse impacts.   

The Prime Minister has expressed concerns about the timing of this Bill within the context of broken public services, specifically referring to the need for investment in both palliative and social care services.

An amendment to exclude from eligibility for assisted dying anyone seeking an assisted death due to inadequate social care services was voted down when the Bill was last in the Commons.

We know that people with terminal illness in need of social care will choose to end their lives in avoidable circumstances if this Bill is passed before the availability and adequacy of social care support is improved. (See Rosy Bremer’s story, below).

This is a major risk factor that is omitted entirely from the EQIA.

Others major gaps concerning disability include:

• Risk of medical coercion, both unintentional, linked to Disabled people’s internalised oppression, and intentional, due to negative judgements on the quality of Disabled people’s lives. One well-known example of the latter is the unlawful recording of DNACPR notices on Disabled people’s medical files during Covid.
   
• Risk due to lack of equal access to healthcare for disabled people. This again is a very well-documented and continuing issue within the UK. Proposed measures for the Voluntary Assisted Dying services mean it could well be easier to access than treatment.
   
• Risk facing care home residents due to the savings to care home budgets linked to assisted dying. The new impact assessment includes a higher figure for these savings due to the increased estimates on numbers of assisted deaths per year. The Bill allows for marketing of the proposed Voluntary Assisted Dying service. Campaigners are aware of care home groups which have already been evaluating the savings they could make.
   
• Risk of discrimination against people with mental health support needs due to inadequacy of suicide prevention measures within the Bill. This inadequacy is one of the main reasons why the Royal College of Psychiatrists has been unable to support the Bill, despite not having a position on the principle of assisted dying itself. Stronger safeguards would include: a Multi-Disciplinary Panel at the start of the application process to identify changes and additional support provision that could change the person’s wish to end their life through an earlier assisted death; replacing use of the Mental Capacity Act with a test better able to assess where impaired judgement due to suicidal ideation and/or unmet mental health support needs is affecting a person’s ability to form a “clear, settled and informed wish to end their life.” Both of these were rejected when the Bill previously passed through Parliament.
   
• Lack of attention to intersectional impacts creating cumulative risk. For example, people who are LGBTQ+ are more at risk of experiencing mental distress and therefore more at risk from potential adverse impacts on people sharing this protected characteristic arising from the Bill; the EQIA identifies domestic abuse as a factor relevant to coercion but fails to link it with mental distress and suicidal ideation despite the fact that victims of domestic abuse are more likely to die by suicide than homicide.

Rosy’s Story

Rosy Bremer was born, lived and died in Portsmouth. She had one daughter. She was a well-respected anti-war activist, librarian and journalist.

From an early age she suffered significant health problems. From the age of seven she had rheumatoid arthritis and in her twenties an auto-immune blood disorder. Later she became severely disabled as a result of motor neurone disease (MND).

Bremer endured many battles to obtain essential living equipment and care, and to challenge discriminatory treatment.

It took over one year for a National Health Service wheelchair to be delivered and the refusal of her local authority to provide overnight social care support meant she was unable to use her ventilator at night.

Her friends set up a crowdfunder to make up the shortfall between the support Rosy needed and what the local authority was willing to fund.

Her daughter and cat were unable to continue living with her due to the inadequacy of her support and in the end had no choice but to move into the care home, where she died.

Although Rosy had been against legalisation of euthanasia and assisted suicide throughout her life, by the end, her lack of support to continue living meant it was something she would have welcomed.

She died on 27 March 2025, at the age of 53, just days after her friend, Rev Wendy May Jacobs read out the below words about Rosy’s experiences in Parliament at a lived experience meeting convened by Baroness Jane Campbell which only three MPs attended. An obituary was broadcast on BBC Radio 4’s Last Word programme.

Testimony from the ‘Unheard Voices’ meeting at Westminster Palace March 24 2025

“There’s so much I could tell you about my friend Rosy Bremer. But I only have a few minutes.

Last autumn Rosy’s Motor Neurone Disease got a lot worse. Her young teenage daughter had to move out of their home to live permanently with the family legally appointed as her guardians.  Even the cat had to leave.

“It was suggested that she apply for CHC or Continuing HealthCare, a caring pathway for those who have complex medical care needs as opposed to social care needs. Rosy was terminally ill and could do nothing for herself – it seemed clear cut.  A friend of Rosy’s who was extremely experienced in the area of complex care went through the application process with her.  When the panel disregarded Rosy’s situation and needs, they just wept together with shock and bewilderment. Rosy was allocated just 12 hours a day care, despite the fact that she could not move from her chair, could not sit on the commode without help, could not feed herself.  All that she could do was painstakingly pick up her drinking tube.

“Most of the 12 hours care allocated to Rosy had to be taken overnight, as without a trained carer Rosy could not use the CPAP ventilator machine.

“To cover the remaining 12 hours during the day, Rosy’s friends and family put together a rota, each person taking different slots during the day.  Rosy’s friends are loyal and loving and each was honoured to do this for her.  But for Rosy it was undignified and exhausting.  No-one wants their friend or their brother to have to wipe their bottom. The rota continued over the Christmas period and then full-time jobs etc started up again and the rota could not be sustained.

“Her friends crowdfunded to make up the shortfall – needing almost £8k a month to pay privately for the extra hours.  Within weeks we had raised over £23k.  The love and generosity overflowing from so many was beautiful to see.  But having to crowdfund just to keep our friend safe was a bitter thing, and it took a terrible toll on Rosy. The shock and humiliation of being denied what she needed made her intensely anxious about the future, over and above the terrible effects of the MND itself.  It left her traumatised, and deeply depressed.

“Rosy’s condition worsened further and she made the decision to go into a specialised Care Home. This is funded. She longed to remain at home but she could not make it work. The care home where she is, is probably as good as it gets.  The staff are kind and they seem happy – a good sign. It is clean, it is quiet, it’s a dignified place, and there are residents there of different ages.  Rosy’s friends and family continue to visit. Her voice is almost gone and she is very, very tired, although frustratingly she still doesn’t sleep well, which is very hard for her. But this betrayal of Rosy by our health and our care system has taken its toll.

“I’m here today to wring my hands at the experience of witnessing my brave, resilient, hilarious, gracious friend being broken by the cruel inadequacy of our health care system. To me, it’s horrifying hearing about the proposed assisted dying legislation when so many are not even given sufficient assistance to LIVE in safety and dignity with the challenges they face.

“It’s a special kind of trauma when you are let down by those whose job it is to look after you at a time of vulnerability.  I don’t know what the name of this trauma is, but Rosy and all those who love her carry it in our bodies.”