good life, good death, good grief

Demystifying Death Awards 2023

We're delighted to announce the shortlist for this year's Demystifying Death Awards, recognising pioneering work that shines a light on death, dying and bereavement in Scotland.

The Awards celebrate those working to make Scotland a place where everyone can help when someone is caring, dying and grieving. Find out more about about the work of the shortlisted candidates below.

Progressive Policy Shortlist - Childhood Bereavement Network: Cohabiting Parents and Bereavement Benefits Campaign

After more than a decade of campaigning, a recent win for the Childhood Bereavement Network and many partner organisations has seen eligibility to bereavement benefits extended, meaning cohabiting parents and their children can now get financial support.

Parents with dependent children are entitled to bereavement payments worth almost £10,000 if their partner dies before the children grow up. These payments, made over 18 months, give families a bit of breathing space as they adjust to life without their mum or dad.

Entitlement is built up through the National Insurance (NI) contributions of the partner who died, in the same way that these contributions build up entitlement to other social insurance benefits such as the State Pension and certain unemployment allowances.

People make NI contributions at the same rate, whatever their relationship status. However, until recently, Bereavement Support Payment was only paid when the parents had been married or in a civil partnership. It was denied to families where the parents had been cohabiting without being married. That meant that around 1,800 grieving families a year faced the terrible double blow of one parent dying and then being denied state support. This injustice took on a new dimension during the pandemic, when so many weddings were postponed.

The impact of being denied these benefits is devastating, layering anxiety and shame on top of grief. One mum said

“Holding down a full-time job whilst looking after a young child with very little support is taking a toll on my mental health leaving little time for grieving, which then impacts on my child’s happiness. I had to sell my house as a result. I feel naïve as I didn’t realise that not being married meant that my child was treated as if they were lesser than children of married parents. This guilt is difficult to handle.

Now, thanks to a dedicated campaign by many organisations and individuals, coordinated by the Childhood Bereavement Network, cohabiting couples are entitled to the benefit. From 9 February 2023, newly bereaved families have been able to claim. Very unusually, the Government is also making retrospective payments back to August 2018 when the Supreme Court found the eligibility rules to be incompatible with Human Rights legislation.

Siobhan McLaughlin and CBN Director Alison Penny outside the Supreme Court

Getting to this point has involved the full playbook of public campaigning, strategic litigation, parliamentary lobbying and working with officials. Since 2011, the Childhood Bereavement Network has co-ordinated activity to try and influence the government to make this change, through proposing amendments to legislation, meeting with ministers and officials, and gathering and analysing evidence for the Work and Pensions Select Committee and individual MPs including Sir Ed Davey and Stella Creasy.

Key to all of this has been the tireless work of parent campaigners, particularly Georgia Elms and Vicky Anning at WAY Widowed and Young, many of whose members have been affected by this injustice. Parents Siobhan McLaughlin, Kevin Simpson and James Jackson were brave enough to appeal the decisions to deny benefits to them and their children – their court victories paved the way for change. Laura Rudd set up a public petition that quickly gathered over 100,000 signatures from people calling for the rules to be amended.

Many organisations have backed the campaign, signing joint letters, endorsing briefings and sharing ideas and insights to help design the changes: the Scottish Partnership for Palliative Care, One Parent Families Scotland and Child Poverty Action Group Scotland, to name but a few. As will be clear, a huge number of people have been instrumental to this change. You can read the thank-yous in this twitter thread.

However, the work doesn’t stop here. While some people have had a straightforward experience of making a retrospective claim since February, and have already received their payment, others (particularly those bereaved longer ago) have struggled to get the information they need about what implications a claim might have on their wider tax and benefits entitlement. We are pressing DWP to improve their communications with potential claimants before, during and after they put in a claim. We also have much work to do to fund the 21,000 families who could be in line for a back payment.

We are also sharing our insights with those campaigning for justice for bereaved people who are still ineligible, including surviving partners without children, and those whose partner was too sick or disabled to build up the necessary NI contributions. It’s crucial that this lifeline support is extended to all those who should be protected at a time of great stress and grief.

For more information, visit www.childhoodbereavementnetwork.org.uk/cohabiting

Read about the other Demystifying Death Award nominees here: Demystifying Death Awards Blogs

Progressive Policy Winner - The Funeral Support Payment by Social Security Scotland

Social Security Scotland has pledged to administer payments and benefits with dignity, fairness and respect. Nowhere is this more important than with Funeral Support Payment, which offers help to people during some of their most difficult days.

Specially trained advisors help eligible clients get the support they need. Introduced in 2019, Funeral Support Payment comes in three parts. The first covers the cost of burial or cremation. The second component covers the standard rate of £1,178.75 for other expenses for most clients or £143.85 if the person who died had a pre-paid funeral plan. The third covers other costs including travel expenses incurred by the clients, transport cost to transfer the body of the deceased and some document costs and medical costs.

Clients are eligible for Funeral Support Payment if they or their partner live in Scotland, get a qualifying benefit or payment and are arranging and paying for the funeral of someone who lived in the UK. Applications must be made within six months of the person dying. In most cases the person making the application will be a close relative, but they don’t have to be. Before applying, clients should register the death of the deceased person and check whether they might be eligible. They may want to inform their funeral director though this is not a requirement.

Applications can be made online via the mygov.scot website, by post, over the phone or in person.

It’s important for Social Security Scotland to make sure as many eligible people as possible are receiving Funeral Support Payment. This year we have embarked on a marketing campaign to increase awareness of the payment. You may have seen our posters advertising Funeral Support Payment on hundreds of phone kiosks across Scotland during the campaign which ran from January until April. There were also adverts running on radio and on digital channels.

Our most recently published statistics show that take-up – the percentage of those eligible successfully applying for the payment - was 66%. That represented a rise on the previous year but there is still work to be done to make sure that more of those eligible can apply successfully. That means a total of £32.5 million worth of support since the payment was introduced until the end of December 2022.

In December last year the then Minister for Social Security Ben Macpherson visited Scotmid Funerals and discussed better engagement between Social Security Scotland and the industry.

We have also been talking to other industry bodies and stakeholders as we continue our efforts to drive take-up forward.

As well as Funeral Support Payment, Social Security Scotland operates a bereavement service of specially trained client advisers provided help to people who have to report a death and need to update us. With just one phone call, people can report the death of a family member, friend or loved one directly to an expert adviser. At that point, our adviser will take the necessary information for all payments that need to be cancelled.

Social Security Scotland is delighted to be a part of the Demystifying Death awards and working with the Scottish Partnership for Palliative Care.

Read about the other Demystifying Death Award nominees here: Demystifying Death Awards Blogs

Inspiring Community Shortlist - No One Dies Alone Ayrshire (NODA)

We are a registered charity made up of compassionate volunteer companions who kindly volunteer their time to sit with people who are dying in their final hours. Our volunteers provide companionship and a listening ear to anyone who needs support to ensure no-one is left feeling alone or isolated. We also work with those who have families who need a break or some support, and offer them help laying their loved one out at home if they wish to do so. We run two local bereavement support groups and offer one to one bereavement support.

We have a new project called Sandy's Toolbox which offers a crisis care package of practical items for families who need them such as wipes, pads, mouth swabs etc. The toolboxes also come with some leaflets on how to do a bed bath for families who find themselves suddenly in that position.

Our ethos is to make a difference in the local community by training, empowering, and supporting members of the community to help each other at the end of life. We are working at many different levels to instigate this change and are part of the progressive death movement currently sweeping the nation, bringing back a sense of care and naturalness to death, dying and grieving.

Our volunteers are ordinary members of the public, but many are also professionals including nurses, ex nurses and others from the care sector who know how much our service is needed. We continue to use their invaluable feedback to adapt our

training and improve our services. We also encourage our volunteers’ continuous self-development and provide clinical supervision and peer support for our staff and volunteers.

We are the first project of this kind set up in Ayrshire and have been up and running since October 2018. We received our charitable status in October 2019 and continue to go from strength to strength as we gain more volunteers and supporters.

Our volunteers now number 43 and we have 5 board members. We have ongoing recruitment and training as these numbers increase.

Find out more at NODA's website.

Read about the other Demystifying Death Award nominees here: Demystifying Death Awards Blogs

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