Case Study - Marie Curie NI
In Northern Ireland, they provide home-based nursing across all five trusts and hospice services in the Belfast and South Eastern Trust. As well as policy and campaigning, they are the largest charitable funder of research to improve end of life care.
Craig Harrison, Policy and Public Affairs Manager at Marie Curie NI, talked to us about the work of the organisation and how they have made an impact on public policy recently through their lobbying and campaigning efforts.
Marie Curie believes that everyone affected by dying, death and bereavement deserves the best possible experience, reflecting what is most important to them. We run clinical services and information and support, we advocate on behalf of people affected by dying, death and bereavement and we're the UKs largest charitable funder of palliative and end of life care research.
Employing approximately 395 people throughout Northern Ireland, Marie Curie cares and supports people impacted by dying, death and bereavement in Northern Ireland. We provide palliative and end of life care, bereavement support and information and advice to over 4,000 people in Northern Ireland each year.
In addition to our face to face health and welfare services, our campaigning and advocacy work helps to create a policy and legislative environment that better meets the needs of everyone impacted by dying, death and bereavement – not only in relation to health and social care services, but their financial, social and practical needs as well.
The number of beneficiaries of our campaigning work is difficult to measure, but we advocate on behalf of everyone impacted by dying, death and bereavement and it is estimated that over 11,000 people die with palliative care needs in Northern Ireland each year. This figure is based on over 15,000 deaths recorded in Northern Ireland each year and research from Murtagh et al which showed that 75% of all deaths could benefit from a palliative care approach.
Marie Curie has a dedicated Northern Ireland Policy unit which is part of a UK-wide Policy and Public Affairs team. The dedicated unit in NI enables Marie Curie to act and respond to policy and legislation implemented by the Stormont Executive.
Since 2018, Marie Curie – working in partnership with the MND Association – has been campaigning to scrap the six month rule for terminally ill welfare claimants in Northern Ireland.
Terminally ill people can apply for fast-track access to welfare benefits without having to go through the normal disability assessments or fill in as many forms. This fast-track process – known as the Special Rules for Terminal Illness (SRTI) – automatically entitles the claimant to the highest rate of the benefit, but only those who can provide evidence from a medical professional that they have six months or less to live are eligible to make a SRTI claim.
This 6 month rule was resulting in many terminally ill people with unpredictable diseases – particularly conditions like motor neurone disease or heart failure – being excluded from the fast-track process, because it was too difficult for a clinician to make a definitive judgement on whether they may live longer than six months. These people were being forced to apply through the standard process – having to endure disability assessments, completing extensive paperwork and waiting months to receive their payments. Some terminally ill people were dying before receiving a penny.
Our campaign sought to deliver reform to this rule. We focused on securing cross-party political support for scrapping the 6 month rule and raising awareness of its impact among the public. We engaged extensively with MLAs from every party and took our case to the Communities Minister. This included gathering the stories of people with lived experience of the SRTI system to demonstrate the real-life impact to policymakers.
The campaign received widespread political support – including an unanimously backed Assembly motion in October 2020 – and our policy ask was endorsed in the recommendations of both the Rader and Cavanagh reviews of Personal Independence Payments in Northern Ireland.
On 30 June 2021, the Communities Minister announced that she would legislate to scrap the 6 month rule and extend the life expectancy criteria in Special Rules benefit claims to 12 months.
The bill to deliver reform of the 6 month rule – the Social Security (Terminal Illness) Bill – passed Final Stage in the Assembly on 24 January 2022.The bill is now awaiting Royal Assent and is expected to be operationalised from the beginning of April 2022. This will change the lives of countless terminally ill people in NI for the better – ensuring they can spend the time they have left with financial security and making memories with loved ones, rather than fighting against the bureaucracy of the benefits system.
Estimates from the Department for Communities suggest the reform could provide fast-track access to social security benefits for nearly 2,000 more terminally ill people each year in Northern Ireland – the equivalent of a near 90% increase in the current Special Rules caseload.The policy change will represent one of the biggest breaks of parity in social security law between Northern Ireland and Westminster in the history of devolution.
The announcement also had a major impact beyond NI, putting greater pressure on the Department for Work and Pensions in Westminster to reform the Special Rules in England and Wales. Seven days later, DWP announced it would follow NI’s lead and introduce similar changes.
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