Bereavement and Building on the best by Linda Magistris

Having lost my partner Graham in September 2014 I was desperate for support, however visits to my GP in a plea to help with the ‘crazy’ mixed up, utterly debilitating feelings I was experiencing offered only medication or 'posh tissues' (the suggestion from one doctor), which left me completely baffled as to why there seemed to be such a lack of help and information available. The only other suggestion my GP could offer was Cruse, but it wasn’t available in my borough.  Thankfully I did manage to see a Cruse counsellor after a month or so, having resorted to the inconvenience of staying with a friend in order to access the service, who were helpful for the raw grief I was suffering, however encountering this problem only fuelled my determination even more to try to resolve these issues that seemed to be faced by the bereaved in sourcing and accessing the early support they need.

Graham was treated at The Royal Marsden and the care he received during the ten days I spent with him in the ward, after he was given the news that the cancer had spread was outstanding.  I was extremely thankful for the kindness, professionalism and dedication shown by the nurses.  However, it was incredulous to me that a hospital such as this, a renowned global leader in cancer research and treatment, did not offer a bereavement support service. I am now one of over 200 volunteers, many of whom would be more than happy to help with this service, so hopefully we will be able to find a solution.  St George's Hospital in Tooting, one of London's largest teaching hospitals, another place where Graham was treated, also did not have any bereavement support provision in place and in fact when I enquired, they asked if I would like to start a support group there, as they had nothing to offer me. 

Fortunately six months or so after Graham died I found Widowed and Young, purely by chance, having randomly googled 'bereavement’.  WAY, a nationwide charity with just over 2000 members supports those under 50 who have lost a partner and has been a lifeline for me as there certainly didn't seem to be anything else on offer at the time that could help. I organised my first WAY event, an afternoon tea for ten complete strangers, but we instantly had a shared bond, a kind of unspoken understanding of each other’s feelings as soon as we met and since then I have become London Area Coordinator, organising regular events to bring everyone together in a really uplifting, relaxed and safe environment.  We’ve done everything from ‘dodgems & dinner’, to drinks at a speakeasy and being fabulously pampered at a spa event.  It is incredibly therapeutic to be able to share your story with others who completely ‘get it’ and having listened to countless tales of post death gripes of ‘being left to sort things out ourselves’, I ran a survey of approx. 300 members nationwide to find out exactly what the experiences were of the support they received straight after their partner’s death.  It is clear that there was a severe lack of coherent information provided and it seems completely dependent on where you live as to what type of support the next of kin receives immediately after the death, if anything at all, as was sadly the case in many areas.  For myself, I am still bemused as to why the hospice who were looking after Graham’s care have never contacted me or anyone in his family since he died.  Not a call, not a letter, not a thought it seems.  How can that be acceptable?

My research over the past 12 months or so has included discussions with various health professionals such as GPs, consultants, CCGs and counsellors, as well as academics and MPs interested in bereavement and I’ve interviewed many of those who have lost someone close, be it a child, parent, partner, sibling or friend.  It is extremely encouraging to learn that there are some excellent charities and organisations offering outstanding EOL and bereavement support, which should be applauded and replicated, however, it is also clear that the provision is sporadic, with varying standards of care.  The key I believe is simple and clearly evident –  we just need to ‘join the dots’.

I therefore decided that I needed to try to do something about the disparity that exists in bereavement support in the UK and have recently formed The Good Grief Trust, a charity which aims to tackle this issue and help to make significant improvements across the country.  Our objective is to find the bereaved, acknowledge their grief and signpost them quickly and efficiently to the best support groups, organisations and services in the UK, which will hopefully help to alleviate some of the stress, anxiety and sense of isolation that is often associated with the early stages of grief.  Commonly many are left to source the support they need entirely on their own, sometimes in a haphazard way, often through word of mouth, or by surfing the internet which takes a great deal of effort, time and energy and all at a time in their lives when they feel most vulnerable and do not have the physical or mental strength to cope with even the most basic tasks. 

My understanding of EOL and bereavement and all the wonderful work that is being done in this field is developing all the time and I have been extremely fortunate to meet some incredibly inspirational people.   Tony Bonser is one such man.  We met when we both appeared on BBC Breakfast late last year and it is through his passion for these issues and his fantastic networking skills that I have been introduced to so many interesting, likeminded people, such as Claire Henry whose enthusiasm and determination I admire immensely and who has been so supportive of my vision.  I was kindly invited to join the People In Partnership Group recently where I met Anita Hayes and was delighted to hear about the work she and Paul are doing on the Building on the best programme, so I’ve now piggy backed the project to research the provision for bereavement support in each of the ten sites and plan to collate the data I collect to create the ‘best of the best’ for inclusion in the ‘Pack’.

I set off on my first visit to Basildon & Thurrock Trust last week and met Dawn Haigh, their compassionate dedicated bereavement manager.  She had recently returned from a visit to Salford and was enthused by the work Fiona Murphy and the team had done for the hospital with the aim of trying to replicate some of their ideas. Dawn was particularly impressed by the initiative of placing a flying swan on or near the ward where a patient was dying, so that every member of staff would be fully aware of both the patient and carer’s needs.  Basildon are now holding regular monthly drop in events, with all levels of staff invited from the cleaners to the consultants to enable informal discussions to take place openly, to voice any concerns around bereavement care and to share thoughts and suggestions for improvements, which are always very well attended.

More positive feedback came from a discussion I had with Dr Karen Groves, prior to my visit to Southport & Ormskirk which revealed that the Trust had an excellent bereavement programme in place, with immediate and ongoing support offered to relatives.  Condolence cards were sent quickly following a loss, follow up telephone calls made and even home visits from District nurses, which was all incredibly impressive and I very much look forward to meeting her in person, as the Trust seems to cover absolutely every angle with genuine passion and commitment. 

The Good Grief Trust has been established to prevent those in most need from slipping through the net, which is currently the danger.  As we know the potential implications of missing those suffering from severe complicated grief can be extremely serious.  Only recently there was a news story of the mother who had lost her son a year ago through suicide.  She tragically ended her life the same way, as she could not live without him. I was told a comparable story by a local GP who had a patient in similar circumstances and the practice just didn’t have a clue where to send her for support.  I had exactly the same response from three CCGs I met at Parliament recently who all agreed that they urgently needed the type of information and guidance I was proposing to provide, in order to support their own practitioners.

The results of the nationwide research I am currently undertaking will determine the format of a new Bereavement ‘Pack’ - The Good Grief Guide.  It’s content will contain fully comprehensive information, support and services, available immediately after a death, to be supplied by all front line organisations, i.e. hospital, hospice, GP, police, registrar, care home, clergy, funeral director.  I would like to provide a short inspirational film featuring personal grief stories, from both those newly bereaved as well as from those further along their own personal journey, to offer a virtual hand of friendship from others who have been through similar experiences and a friendly ‘face' to bereavement that generally seems to be lacking.  Hopefully by showing the reality of grief from the perspective of real people, explaining and normalising the emotions that may be felt, it could make a positive difference to the impact grief has on their lives going forward.  Media is a powerful tool and as we know for many, peer to peer support is one of the most beneficial ways of dealing with grief.

As the UK does not at present have one main portal/database providing bereavement support, we aim to create a fresh new ‘umbrella’ Website, The Good Grief Guide.com which will signpost the user to the countless number of excellent charities, organisations and services for those at any stage of grief, both in the UK and globally, simply, quickly and efficiently, with inspirational and creative content, all under the one ‘hub’ at the click of a mouse.

For me it is always the individual, personal stories that have the most impact and is the reason why I am passionate about trying to help us all pull together, share our experiences and expertise and raise standards across the country as a whole.  I was at a meeting in a local hospital recently and called in to the Pals office while I was there to have a look at the literature they provided to the bereaved.  The booklet was quite comprehensive and covered most of the well-known support groups, however, I noticed that WAY were not included.  The manager there had never heard of the charity and when we chatted further, it turned out that his own brother had lost his wife two years ago.  He was under 50 and had two young children, so he could have joined and accessed WAY’s peer to peer support, but instead he was left completely devastated and two years on had been desperately struggling to cope, with his family extremely anxious and at a loss about how they could support him.  Perhaps it would have helped, we don’t know, but he was never given the choice.  A clear example of one person falling through the cracks. One person who could possibly have been relieved of years of unnecessary angst and heartache if only his brother, a bereavement manager, had been given that extra piece of information to point him in the right direction.  How many others have not found the support they so desperately needed? Now we just need to find those cracks and smooth them over – not an easy task, but certainly one I believe can be achieved;

 

“As Individuals we are one drop, but together we are an ocean”