Bereavement Charities

Selaine Saxby Excerpts

Tuesday 5th July 2022 Westminster Hall

[Selaine Saxby (North Devon) (Con)]

I beg to move,

That this House has considered funding for bereavement charities.

It is a pleasure to serve under your chairmanship, Mr Davies. At the end of March 2020, just as we entered the first lockdown, I was contacted by a constituent, Michaela Willis. Today, I want to share her journey.

In the late 1990s, Michaela founded and was chief executive officer of the highly regarded National Bereavement Partnership charity. It was set up to give support to those affected by the issues that arose from the Bristol Royal Infirmary public inquiry and the infamous retained organs scandal. She had lost a baby there herself.

Michaela was chair of the Bristol Heart Children’s Action Group, and chair of the National Committee Relating to Organ Retention. Her charity served both the public and health professionals by providing a helpline surrounding sudden and traumatic death, especially when there were complicated circumstances.

Michaela went on to be a lecturer in death bereavement and human tissue studies, obtained an MSc in healthcare ethics from the University of Bristol, undertook an audit of 36 hospitals and five universities and wrote the bereavement standards for the Irish Government. She was a member of the board for the Retained Organs Commission and the Human Tissue Authority and sat on the council of Action against Medical Accidents. She was also on the board of North Devon primary care trust for six years. In 2002, Michaela was awarded an MBE for her services in this area.

Michaela contacted me to say she was thinking of coming out of retirement as so many people she knew in hospitals around the country had been in contact about what they were dealing with as the pandemic took hold. We are not good at talking about death in this country, but Michaela is an expert. It was clear to both of us that bereavement support was going to be needed even more than normal as we headed into the first wave of the pandemic.

Each year in England around 500,000 people die, leaving bereaved families and friends to deal with the aftermath of loss. My grandmother died on Friday. At 98, it was perhaps not unexpected, but the hole it leaves and the shock for my mother, uncle and our extended family is palpable. As a family, we will muddle through. Most people are able to use their inner resources, combined with support from family and friends, but others, particularly if the death is shocking or living circumstances are difficult, will need the support of trained bereavement professionals to find a way through their loss.

Around 30% of closely bereaved people need organised opportunities to reflect on their grief and get support. A further 10% of people struggle intensively with complex or prolonged grief, and need specialist grief or mental health interventions. Prior to the pandemic, between 20% and 30% of bereaved adults were not able to get the support they needed. As we headed into that first wave, we saw a scared population, with a growing number unable to say goodbye to their loved ones, and a medical profession seeing overwhelming levels of death every day in so many wards around the country.

Michaela clearly had the know-how to do this, and do this she did. I did what I could, not least getting Openreach to kindly lay 5 km of fibre so she could run a helpline from the depths of North Devon. She pressed on throughout the period. I remember discussing with the Cabinet Office—some others here joined those morning calls—and explaining to the Minister that we were going to set this up from the depths of Devon. We were looking at unprecedented levels of death, loss, grief and associated psychological dysfunction.

In the last two years, more than 30,000 people have contacted the National Bereavement Partnership. Over those two years, the charity has witnessed individuals experiencing grief at many different stages, with so many exhibiting severe and varied emotional turmoil. It can be extremely frightening, and can have a detrimental and damaging effect on those who are in desperate need of support, but cannot access it. Indeed, the distinct lack of access to services was the very reason for the National Bereavement Partnership’s inception. As Michaela says:

“We have by far outstripped our own expectation of the demand for the services the charity offers, with contacts to the helpline ever growing with people who need the right kind of support along with talking space and talking therapies.

Access to funding has become increasingly competitive over recent years, with bereavement secondary to charities supporting life-saving treatments and heart-wrenching causes. In the 25 years I have worked in the sector, many will have heard me say ‘death is not sexy’ (for want of a better phrase, but sadly it is fitting)…Media also plays a significant role in impacting on where donors place their money and supporting a charity with either a feel-good story, or a brutally heart-wrenching story, is frequently more favourable to bereavement.”

There is an increasing gulf between the National Bereavement Partnership’s funding capacity and its increase in contacts—people who are desperate for help. That charity has had to pause its waiting list for counselling, as it cannot meet demand. It saddens all of us immensely that that charity is not able to help and support people at the early stages of their struggle before their ability to cope becomes more diminished, causing many other issues in their lives and with an inevitable knock-on impact on the NHS. The past two years has shown the National Bereavement Partnership that if it can assist at an early stage and talk coping mechanisms and strategy, that grief journey can be very different.

The covid-19 pandemic and its continuing legacy has brought unprecedented levels of grief and psychological dysfunction to those suffering a loss. There was grief pre-pandemic, and there are many unique pandemic and aftermath grief risk factors including dysfunctional grief, symptoms of post-traumatic stress disorder, general psychiatric distress, disrupted meaning, and functional impairment in treatment seeking.

Those factors are coupled with many living losses and contending with varying levels of emotional wellbeing and mental health, and the coping strategies that people turn to in order to get by are truly alarming. They include alcohol, antidepressants, antipsychotics, worsening mental health including self-harm, risky lifestyles, suicidal ideation, and gambling. The National Bereavement Partnership has taken more than 30,000 calls and delivered over 80,000 hours of helpline services and over 10,000 hours of counselling. However, demand continues to outstrip the current supply.

The service provided by the National Bereavement Partnership is more personal and proactive, enabling reduced numbers to free up valuable NHS time, and is therefore dramatically more cost-effective. It describes many callers as having evidenced PTSD symptoms, psychiatric distress and functional impairment. A smaller, but still concerning, percentage have reported clinically significant symptoms of dysfunctional grief. It is imperative that access to talking therapies is available. The counsellors at the National Bereavement Partnership strive to address the breadth of psychiatric distress in those bereaved by a covid-19 death and its aftermath, and hone their skills in promoting meaning making in the wake of the trauma and loss generated by bereavement during the pandemic.

Living losses have dramatically compounded grief, and in some cases have taken on a life of their own. People feel bereft by significant losses in their life, including the loss of a job, furlough, the loss of their way of life, the loss of a home, debt, the loss of relationships, or just the loss of normality as they once knew it. Now, substantive increases in the cost of living are creating changes that are increasing anxiety for people.

The National Bereavement Partnership has described receiving an abundance of calls from those who have lost loved ones by suicide, and those people’s struggle at being left behind. Sadly, that charity also receives more calls than it would like from people contemplating suicide because of personal loss. Its staff work with any support they have and look to find additional support. Those who suffered losses during covid times, who missed routine treatments, or who were affected by a sudden and traumatic death also have complications on their journey, as the expected passage of such an event was not as it should be and services were more skeleton than normal.

The National Bereavement Partnership says that it was in a position to provide 105 hours of helpline service a week and 12 sessions of counselling to heavily triaged callers who were in need, but, as a victim of its own success, it is having to signpost many callers on to a waiting list or to other charities, as for several reasons, it is unable to keep a sustainable funding flow. The callers who that charity puts on a waiting list are those who its staff feel are the most able to wait, or those who they can refer to other services. However, those services are already full, and people end up on a never-ending merry-go-round of being passed around. Preventing such a merry-go-round was the very reason the charity set itself up in the first place. However, due to the lack of funding it is currently experiencing, the National Bereavement Partnership’s helpline output has also had to be reduced. It could instantly lift back up to full capacity at a moment’s notice—all of its team members are on stand-by. Voluntary support is invaluable, but not sustainable for optimum service delivery.

The charity feels that it has been let down by grant funders, who had promised significant funds, which were then diverted to other worthy causes, notably Ukraine. The sadness of that is that the charity has again witnessed a spike in contacts due to the impact that the war is having on people, yet it is struggling to cope. The charity and I believe that it has proven that it excels at service delivery when sufficient funds are in place. The service is well received and has had tremendous feedback. It prevents many people from having to use the NHS, prevents a deterioration in mental health and, in some cases, saves lives.

Sustainability has been problematic. The charity feels that its cause is not feelgood, and it finds that hard to sell to potential funders. It is also important to recognise at this point how many charities struggled to raise funds through the pandemic: the circumstances were difficult for fundraising. The partnership is a new charity, set up in the heart of the pandemic, so some of the natural fundraising streams have not been available to it. Furthermore, after going to great lengths, the charity found some funders that have not delivered, which caused additional friction in service delivery. It received governmental support in the past, enabling it to deliver an optimum service for a time, but the funding was short-lived. Not continuing it was short-sighted because when the service is sustainable, it eases the NHS, stopping more people from having to enter our valuable health system and giving independent support to people who call and need it.

The charity feels that, to continue to do its work and to deal with the increasing demand on its service in a world where access to funding is stark, it needs to find financial support now—before effective services are lost, increasing pressure on other already overstretched services, in particular the NHS. I have also been overwhelmed by the number of other bereavement groups and charities to have contacted me ahead of the debate to highlight identical issues elsewhere in the sector.

The charity will continue to seek funding from as many areas as it can, and I hope that anyone listening to the debate and feeling like making a donation will be able to, and will work with the charity to see what else can be done to support it. It launched with speed and yet, in a matter of months, became the key player in the sector, given the complete service it offers. Ultimately, good bereavement support leads to good mental health and wellbeing in a world that is crippled by losses. Rather than being ignored, that should be embraced.

The charity’s financial requirement to meet the demand of the service—all it needs per month—is £20,000, with an additional £10,000 of expenditure each month targeted at counselling. That is all. Some numbers we talk about in this place amount to billions, but this is really not that much. However, without support from somewhere, this vital charity will not be able to continue. I applied for the debate to highlight the issues for the charity that, in a tiny way, I helped to set up in that first lockdown. It was not really for the people of my constituency, because our pandemic was smaller than in many other parts of the country, but from the depths of North Devon one woman reached out across the country. Other bereavement charities have also contacted me to highlight the variance in their funding and the concern that integrated care boards will not give bereavement support the priority that it rightly deserves and needs.

The NHS needs a senior lead for bereavement. The issues that stem from grief, if left unsupported, cost the Treasury nearly £8 billion a year through reduced tax revenues, from a cost to the UK economy of £23 billion a year. This week, Michaela is the joint author of a paper in the British Journal of Guidance and Counselling, which details that there have been more than 6 million deaths globally from covid-19, including nearly 175,000 here in the UK. Each death has been estimated to affect an average of nine family members. We know our mental health has been damaged by the pandemic, and those who lost loved ones—and we with them—must ensure the grief and distress they and we have unfortunately experienced.

We must also ensure that that grief does not lead to another pandemic of highly distressed mourners. We must find a way to fund such vital services more effectively, to ensure that the knowledge and experience of someone like Michaela can benefit those who so need it.

--- Later in debate ---

[Selaine Saxby]

It is a pleasure to have you in the chair, Mr Davies. I thank the Minister for her words. I hope that this is the start of a conversation and that, by talking about some of these difficult things in this place, we are able to move these things forward. I thank the hon. Member for Tooting (Dr Allin-Khan)—my grandmother was one of her constituents. I place on the record my thanks to all hon. Members for their kind words this afternoon. I would dearly like to make this a tribute to my grandmother Mrs Doreen Fitch.

Question put and agreed to.

Resolved,

That this House has considered funding for bereavement charities.