The Terminally Ill Adults (End of Life) Bill
Assist us to live!
We are gravely concerned by both the content of the Terminally Ill Adults (End of Life) Bill - TIA Bill - brought forward by Kim Leadbeater MP, and due for its second reading on 29/11/2024, and by the way it has been brought forward. We urge all MPs in Greater Manchester to read the TIA Bill carefully and cautiously, and to engage seriously with the concerns of local disabled people.
The TIA Bill clearly seeks to address legitimate grievances brought forward by people at the end of their lives. Trust in the quality and provision of palliative care is shockingly low, and the number of terminally ill people dying in poverty has increased dramatically over the last five years. As disabled people, we know that the quality and availability of support services and housing dramatically reduce someone’s autonomy to receive medical care in a way that supports their lifestyle and personal relationships. It is right and understandable that terminally ill people can no longer tolerate this intolerable situation. The question for MPs is: will they simply offer terminally ill people a way out of life, or will they try to change the things that make life unbearable for dying people?
In its current form, the TIA Bill provides weak safeguards against abuse. As Alex Ruck Keen KC has pointed out, advocates have yet to demonstrate a convincing way to integrate decisions about early death into the UK’s Mental Capacity framework – raising concerns that either reduced capacity could be missed by medical professionals and doctors, or that decisions to die could be supported by professionals in ways the TIA Bill does not foresee. The TIA Bill does not convincingly address these concerns.
Likewise, Sir James Munby (former President of the High Court’s Family Division) has warned that the TIA Bill does not go far enough to safeguard against coercion. While the TIA Bill insists on a High Court Judge approving requests for assisted death; it lays out no requirement for this judge to take evidence from the patient or their family, to be transparent about the reasons for their decision, or to be subject to usual legal appeal processes. This approach both exacerbates the risk of vulnerable people being pressured to end their lives, and undermines the relationship between the High Court and Court of Appeal in Britain’s constitutional settlement.
We do not believe these concerns can be adequately addressed by a Private Member’s Bill – which necessarily receives less legal scrutiny and weaker integration into other laws than a Government Bill. The TIA Bill touches quite literally on life and death; but also on the basic principles of our legal system. It should not, to quote Ruck Keene KC, be decided ‘on the fly’.
We are further concerned by the impact that normalising “assisted dying" will have on the quality of palliative and other healthcare. The quality of palliative care has either stagnated or gotten worse since the introduction of similar laws in Belgium and Canada, access to palliative care for eligible Australians has been found to be 'inadequate', and 10% of requests for medical assistance to end life in the Netherlands are linked to ‘suboptimal palliative care’. While we have no desire to debate laws in other countries, rather than one presented to Parliament; we believe that proponents of the TIA Bill are obliged to explain what effect it will have on NHS spending for terminally ill and disabled people – especially given the concerns raised by the Minister of Health on this issue.
We agree with proponents of the TIA Bill that terminally ill people deserve greater autonomy and greater assistance at the end of their lives. They deserve to receive good quality medical and social care: free at the point of use, and delivered in ways that help them live their lives as they choose. They deserve not to have to worry about poverty, what will happen to their family after they go, or whether pain relief will come too late if their condition worsens out of normal working hours. They deserve to live the last weeks of their lives in their homes, surrounded by people they love. Everyone deserves choice and control over their lives right up to its final moments. We believe that granting people dignity is about more than one choice – whether to die now, or not. It is about empowering them to make all the choices non-disabled people take for granted every day. The state can help people empower themselves by looking seriously at radical reform to social care and mental health care, NHS funding, access adaptations to housing, and the rate of benefits paid to terminally ill people and their family carers. We believe that this will provide a more adequate solution to the untenable position terminally ill people have been placed in.
Other Campaigning: Over the years we've campaigned for accessible public transport, the official recognition of British Sign Language, saving the Independent Living Fund and keeping rail ticket offices open.
At the moment we are actively campaigning for accessible housing and against the use of an algorithm that unfairly targets disabled people.
Accessible housing for all
The Government wants to change the way houses, shops, roads, and public buildings like schools are built - but they've left out disabled people again! The changes they want don't mention accessibility, adapted housing, or decent transport.
We've worked with other disabled people's organisations in Greater Manchester to put together a response telling them what we want. We say that any rules on planning must
- Explicitly include accessible housing
- Say that all new housing should be at minimum adaptable for wheelchair users
- Say that 10% of all new houses should already be adapted for wheelchair users before their rented out or sold.
- Remove any suggestion that accessible housing is ‘exceptional’ or should be planned differently from other types of housing.
- Make councils come up with inclusive design codes – covering the accessibility of public space, active travel policies, etc.
- Make councils form Highway Access Groups with disabled residents.
- Recognise that Disabled Facilities Grants (DfGs) are failing, and that waiting times must be cut and awards increased.
- Make councils/regional authorities keep databases of the accessible housing in their areas (both social and private-rented).
- Set rules for the accessibility of green spaces.
- Commit to younger people’s right to independent living, and take action to support young disabled people moving for work or study.
Challenging unfair algorithms
We've been working with Foxglove Legal to bring a legal challenge against the Department of Work and Pensions about potentially discriminatory algorithms they use to tackle benefit fraud.
Like many legal challenged, it's a long ongoing process and we will provide updates when we can.