Terminally Ill Adults (End of Life) Bill

Written evidence submitted by the Multiple System Atrophy Trust (TIAB65)

1. Multiple system atrophy overview

1.1 Multiple system atrophy (MSA) is a rare progressive neurological disease that causes nerve cells to shrink in different areas of the brain. It leads to problems with movement, speech, balance and autonomic body functions such as bladder and blood pressure control.

1.2 It affects around 4.5 people per 100,000 meaning around 3,300 people are living with MSA in the UK.

1.3 MSA usually starts between 40-60 years of age, affects men and women equally and average duration between first symptoms to death is 7-9 years.

1.4 Its cause is currently unknown and there is no remission or cure.

1.5 The MSA Trust is the UK’s only organisation solely supporting people affected by MSA. We employ MSA Nurse Specialists, run Support Groups and fund research to try to find the cause and cure for MSA.

2. Views of people affected by MSA regarding legislation on Assisted Dying

2.1 We conducted two Needs Surveys of people affected by MSA in 2019 and 2022 which were the largest of their kind in the UK.

2.2 We asked for views on legislation around Assisted Dying and the following is a resume of responses:

"Multiple System Atrophy (MSA) is a very rare progressive neurological condition. There is currently no specific treatment or cure. At the advanced stages of the condition people with MSA will require a high degree of nursing care and access to palliative care.

The MSA Trust is the only organisation in the UK solely focussed on supporting people affected by MSA. We have always had, and continue to have, a neutral stance on the issue of Assisted Dying. It is currently illegal in the UK but there has been growing debate, including in Parliament, about a potential change in the law, provided there are suitable safeguards in place.

In our 2019 MSA Needs Survey, https://www.msatrust.org.uk/cause-and-cure/msa-needs-surveys/ we sought the views of people living with MSA and former carers about this complex issue.

In the survey for people living with MSA we asked:

"Whether or not you would want the choice for yourself, do you feel the option of assisted dying should be made legal by Parliament?"

Among the 77% of respondents who answered Yes or No, 85% were in favour of a change in the law and 15% were against.

We then asked: "If assisted dying, alongside comprehensive end of life care, was legal in the UK, would you potentially consider it?"

Among the 71.5% of respondents who answered Yes or No, 76% said they would potentially consider it, with 24% saying they would not.

In our survey for former carers of people who had died from MSA we asked:

"If assisted dying had been legal in the UK, how would the person you cared for have felt about having this choice available to them (if there were adequate safeguards) alongside comprehensive end of life care?"

Among the 78.7% of respondents who answered Yes or No, 67.5% said they felt they would have wanted the choice, with 32.5% against.

These responses show that people with MSA and their families have a range of views on assisted dying.

The MSA Trust maintains our neutral stance on the legalisation of assisted dying. We continue to press for high quality palliative care to be available for people with MSA."

2.3 Given that there are a range of views from our members on this issue, we continue to argue for improved palliative care provision and improved choices for people at the end of life.

3. Potential issues with the Bill proposals for people with MSA

3.1 The following section outlines how people with MSA who might wish to request an assisted death might be prevented from accessing this if the legislation as it stands is passed.

3.2 MSA is rare and as such there are few Healthcare Professionals with expertise in the condition. This may lead to difficulties assessing when somebody is within 6 months of death.

3.3 MSA is difficult to diagnose and difficult to state when somebody affected might be within the last six months of life. In our 2022 MSA Needs Survey when talking about the death of the person with MSA, only 22% of Former Carers were expecting the death at the time that occurred. A further 41% were expecting the death of the person they were caring for, but they felt it happened sooner than they thought. For a further 37% of the respondents the death of their loved one was unexpected.

3.4 Many people affected by MSA lose their ability to communicate verbally towards the end of their journey with MSA. One thing we are concerned about is that as the Bill stands, the detailed discussions about initiating a decision on Assisted Dying needs to take place within 6 months of the person being assessed as having that time to live. By that time, many people with MSA will have lost, or have altered, speech and would be unable to communicate verbally. It would seem sensible that for particular conditions that render people unable to communicate towards the end, this decision could form part of Advance Planning conversations and be noted down in advance, just as decisions about DNR are noted. In this way it could still be checked that the person still wishes to initiate Assisted Dying within the last six months by non-verbal means. If there is no process for this many people with MSA may be unable, through lack of communication, to have detailed discussion on their wishes, needs and choices. This link demonstrates how difficult it might be to estimate when somebody with MSA is within their last six months of life. 2023_12_MSAC-Stages_of_MSA-Infographic-Medical-Professional-Version.pdf

3.5 A further issue is around the requirement in the Bill that the medication should be self-administered. Again, because of loss of dexterity and mobility at end of life with MSA there may be a problem in the person themselves being able to administer the dose without some form of help. How the process for this is envisaged needs to be made clear.

3.6 There are also at present significant gaps in provision of end-of-life discussions (and provisions) which need to be addressed whatever the outcome of this Bill. When we asked people with MSA, only 38% had had an end-of-life discussion with a Healthcare Professional even though 78% had thought to some extent about what they wanted to happen towards the end of their life. Over one third had not been referred to any kind of palliative care or hospice support.

3.7 Finally, the situation of people with MSA will not be unique. People with similar conditions such as Progressive Supranuclear Palsy, Corticobasal Degeneration and Motor Neurone Disease are likely to experience the same issues with their progressive neurological conditions.

The MSA Trust has a neutral stance on Assisted Dying Legislation. We wish to continue to be engaged with the provisions of the Bill. Please contact andy.barrick@msatrust.org for further clarification if needed.

MSAT/AB/23rdJanuary 2025