To commemorate Dying Matters awareness week (10-16th May 2021),  Rachel Leech, children and young people’s counsellor (left) and Lorna Barrett, family support worker (right), have written a blog on how to talk to children about death, dying and bereavement.

So often, the first question asked by our patients and families when they’re diagnosed with a life-limiting illness or they are nearing the end of their life is – “What do well tell the children”? Followed by a series of thoughts which include:

  • I don’t want them to worry
  • They shouldn’t have to hear this
  • They are too young to understand
  • I can’t my head around this, how can they?
  • I want to protect my children and their innocence
  • I don’t want to hurt them or make things worse

There is a natural, fear-based need to protect children and young people from upset. Dying Matters encourages us all to talk about death. That conversation includes children and young people who are often naturally inquisitive about life and death.

Lorna explained: ‘A recent visit to the cemetery with my five-year old grandson to a family grave provoked the discussion about my own death in which he concluded: “You can’t die because there isn’t enough space for more words on that headstone.”

‘Comical, BUT the important thing was the conversation about death and dying.

‘In my own childhood, I experienced the sudden and tragic death of a much-loved older brother. Aged ten, my parents and the many protective, loving adults around me thought is best to NOT tell me of the circumstances surrounding his death and I was not aware of his funeral taking place. Nor was there discussion about his loss for many, many years into my adult life.

‘What I needed was the truth, to be included, to contribute to the shared grief and loss. The word DEAD not to be used in place of the whispers and euphemisms of the adults around me.’

We need to talk to the children – knowing what is going on can reduce anxiety

  • It gives children and young people permission to talk, ask questions, say how they feel and talk openly to you
  •  It makes sense of the tears and the upset around them
  •  It can help them cope better with difficult situations in life

The effects of not talking:

  • Can leave children and young people frightened and confused
  • Alone with their worries with no one to talk to
  • Imagining something worse than the reality
  • Misunderstanding and misinformation can lead to a lack of trust

Children are more able to deal with stressful situations when they are given the truth and support to deal with it. Some things that can help with talking and help to build resilience:

Create a worry jar/box – Family members draw or write their worries, questions, and fears, put them in the jar/box and open them together. You can explore together if they are shared worries, if you have answers to questions, or if you don’t know. It’s OK to not know something. It’s good to share your own worries (in an age appropriate way) in the jar/box. This models to children healthy open discussions and shared emotions.

Create a soothe box or emotional first aid kit – You can do this collectively as a family. You may put pictures in the box, blankets, messages and notes. Inspiring comments. Ideas to motivate or soothe. Fidget toys, tactile objects. Each family member may have their own soothe box that way you can explore and celebrate everyone’s own individual soothing/emotional first aid needs.

Muddles, Puddles and Sunshine – This is a fantastic interactive book created by Winston’s wish all about capturing memories and thoughts when someone special has died. Children tend to puddle jump with grief and difficulties. One moment being deep in the puddle of upset and worry and the next jumping out and playing happily. View online here.

Don’t always rely on words with children – Their brains are still developing and their understanding of illness and death may be very different to yours. I often use more creative ways to explore emotions and thoughts such as if your thought or feeling was a colour what would it be? What texture would it be? Where does it live in your body? Can you doodle/draw it? What colour/texture do you need when this is around? For more information on children’s understanding of death you can visit Child bereavement UK.

Some fantastic books:

  • The Huge Bag of Worries by  by Virginia Ironside – a great book for any age showing how it’s good to share worries. See here.
  • Starving the Anxiety Gremlin by Kate Collins-Donnelly – a book that I return to again and again for children and young people to help with anxiety. They have different books for different ages. I like the 5-9 age book for simple exercises and explanations. See here.
  • Lifetimes: The Beautiful Way to Explain Death to Children by Bryan Mellonie – a book suitable for young children introducing lifespans and death without any religious connotations. I had this book on my children’s book shelves from when they were very young. See here.
  • The Secret C by Julie A. Stokes – a book for children and young people about cancer that is straight talking and easy to understand. See here.
  • Sad Isn’t Bad, a good-grief book by Michaelene Mundy – see here.

Let’s get this conversation started!

We are taking an opportunity to commemorate the legacy of Ruth Brown, Hospice at Home senior manager, as she gets set to retire at the end of the month.

Here, in her own words, Ruth explains more about her esteemed career: ‘It all started when two aunts died leaving behind young children, and my father was killed in an accident at work before I was 12 years old, my wonderful mother became both parents. I had to dig deep, growing up very quickly and helping to support my brother, who was five years my junior. I left school without qualifications despite a grammar school scholarship; turning my back on education as it had mattered so much to both my parents.

‘On leaving school, I went on to have a number of jobs, always drawn to a caring role. I was married at 17 and as well as continued work in social care, my husband and I fostered 27 children. I worked at the Devonshire Hospital in Buxton as a nursing auxiliary, and a physio assistant during the late 70s. During this period, I studied at the local college in the evenings achieving a number of GCSEs and an A Level. A move to our farm in 1981 presented us with a brand-new way of life including the arrival of our son. This was followed two years later by the arrival of our daughter. Milking, calving, lambing and continued work with local social care alongside raising our family, kept me busy.

‘When the children were both at school, I became a nursing auxiliary and bath nurse at Baslow Surgery and I was there for 14 years. My role developed to include care of patients with dementia, and I organised bi-annual tea dances in the hope of stimulating memories through music. These were extremely successful and were on calendars well in advance. I began an art group for disabled called Artability, which again achieved great success, indeed I have pictures that hang in my home that were painted for me by my wonderful artists.

‘In 2000, I was encouraged to apply for nurse training by the GPs I worked with at Baslow Surgery. All those qualifications supported this opportunity and at 47 I went to Sheffield University. I graduated in 2004 as an adult nurse just as I celebrated my 50th Birthday. I was drawn to work at Weston Park Hospital due to my interest in palliative and end of life care, and was successful in achieving a rotational post.

‘I was there for a couple of years but missed the community aspect to my role, and applied to do a district nursing degree. I achieved my BA hons in specialist community nursing in 2007 from Sheffield Hallam University, having worked out in New Zealand on a community placement. I returned to Baslow Surgery as district nurse and in the latter years became community matron.

‘We can achieve academically at any age and I am proof that it is never too late. I have always had a clear plan of what I want to achieve next and wanted to end my career in management, with a focus on good end of life care. Sadly, death has never been far away and more of my close family died far too soon, including my lovely mum in 2001 and my husband in 2010. This consolidated my view of what constitutes a good death and made me focus on its importance for both patients and their loved ones.

‘The opportunity to join Blythe House Hospicecare as Hospice at Home manager and to help develop a service for patients in the last year of life was my dream and I believe was always meant to be. It bought together all my experience and skills, and gave me the opportunity to develop a fantastic team all passionate about good end of life care. I am eternally grateful to Janet (CEO) and the board of trustees for the opportunity, resulting in the development of a first-class service so desperately needed. The service has grown and evolved and is now seen as an essential provider of highest quality end of life care by the CCG and fellow providers and community professionals. Most of all, to the many patients and families who have received our valuable care.

‘I thank all who were pivotal to our success; Sam and Kathy who were alongside me from the beginning, the team of healthcare assistants who are pivotal in delivering this high-quality service and have grown to a 40-strong team; Jude who is now manager, and to Jill who is stepping into my role.

‘I look forward to supporting Blythe House Hospicecare and Helen’s Trust in my retirement and volunteering my services and expertise in any way seen as beneficial.’

Find out more about Hospice at Home.

Our counselling and bereavement team is continuing to provide telephone, online and face-to-face support sessions to adults, children and young people throughout COVID-19. Between now and the beginning of the first national lockdown back in March 2020, the service has supported over 115 people.

Rachel Leech, children and young people’s counsellor, has provided an update. She said: ‘We have adapted the way that the service is offered to ensure that we meet everyone’s needs. I’ve heard the phrase that “we are in the same storm but we’re not necessarily in the same of boat” and that’s very true. Some people are incredibly vulnerable, health wise, and need to shield. They have been advised not to leave their home unless absolutely necessary. We understand this and offer telephone or online counselling to ensure that we can still provide a service for people in that particular “boat”.

‘We have sent out ‘Muddles, Puddles and Sunshine’ bereavement books for children. We’ve learnt how to use Zoom and Microsoft Teams to offer online counselling. Some people need face-to-face counselling. Children and young people often need to use creative methods or play to explore their feelings, and face-to-face sessions are necessary to do this. Some people are vulnerable to loneliness and mental health conditions and we recognise that it is vital that we offer face-to-face appointments when online and telephone support does not feel appropriate.

‘We know that our support matters more now than ever. The world is different and COVID adds another layer of trauma to illness and bereavement. To make sure that everyone that needs to see a counsellor face-to-face does, we have taken every step possible to ensure that anyone that comes into Blythe House Hospicecare is COVID safe. We provide grade two medical masks for everyone that comes to Blythe House that is able to wear a mask. We conduct checks before each appointment to ensure anyone that comes for a counselling appointment is free of symptoms and not been in contact with anyone that has COVID. All counsellors wear grade two medical masks, and when working with play with young children, gloves and aprons are also worn. Surfaces and objects are wiped down after every appointment.

‘Please know that we are still here for you no matter what “boat” you are in, and we look forward to the day when normality resumes and we can see you all face-to-face again. In the meantime, continue to take good care and stay safe.’

Find out more about the counselling and bereavement service here at Blythe House.

Well, the sun will shine, eventually! We will be out in our gardens again, we will be immunised and Blythe House will continue to be alongside you.

None of us could have imagined what would happen in 2020, or how we would change and cope. To me, it hasn’t been social distancing it’s been physical distancing. We have found ways to connect and stay connected.

Without you we couldn’t have done anything; our retail, fundraisers, volunteers and donors make sure we can be here for the future. We have never needed each other more!

As you know, we didn’t do an urgent appeal for money when COVID hit; we felt our community needed us to be there with them and help at that time. And we have faith in each other to keep our resilience in the High Peak and Derbyshire Dales.

Working with Helen’s Trust has meant that we have rescued so many more people; got the care out into many more homes, to keep patients with their families.

We have changed shape and made sure we are COVID secure. You will see lots of hospices and clinical services doing this. Fortunately we had started the process pre-COVID, so at Blythe House we are ‘ready to roll’: we are modernised, safe and will be so excited to see you all again. And we will, because it’s you that’s brings the spirit to Blythe House!

Thank you sincerely for always being with us. Keep being kind to yourselves and walk towards the sunshine and freedoms that will come. Happy New Year everyone!

Janet Dunphy
CEO

Following Blythe House’s official partnership with fellow local end of life care charity, Helen’s Trust, Janet Dunphy, CEO, has written a blog about the news…

I was absolutely delighted when Dr Louise Jordan, Chair of Helen’s Trust board of trustees, approached me to discuss the possibility of this partnership, this is why:

As organisations, Blythe House and Helen’s Trust share the same values, we are here to support those with life-limiting illness. The growth of our Hospice at Home service proves how much people want to stay with their loved ones at home at the end of their life. We literally do the same thing for the same people in the same place. Together we do it better. It is because of this that all the trustees and staff involved are so excited and proud to be together as a community. We are a perfect match, like Blythe House, Helen’s Trust is well-loved charity; a small charity with clear ambitions to support as many people as possible when they need us most.

Our services at Blythe House are unaffected by this partnership, but I’m sure you’re pleased to see the developments that enable us to reach even more people who need us. Just as always, Blythe House works to meet the needs of our community. Blythe House is doing the same work, but more efficiently, we have to be here for the future.

The partnership also enhances our workforce, as the Helen’s Trust fundraising team join us. They have ensured Helen’s Trust has kept going and made it as well respected and successful as it is today; their work will continue as our fundraising work for Blythe House continues. I assure you that both teams are raring to go! We will continue to use the familiar and respected brands and profiles, which have defined our two great charities over the years.

We also have an opportunity to expand the work of our community volunteer services. They have made 1,600 contacts in our community, and their achievements shone brightly throughout the COVID-19 lockdown (and still do). The Helen’s Trust community will be able to join that team and support their neighbourhoods with trained volunteers from Helen’s Trust.

In essence: we are doing more – for more people – together. Raising funds has never been more important than it is today, if you are willing to help in any way please contact: fundraising@blythehouse.co.uk.

If you are interested in joining our volunteering team, please contact: volunteering@blythehouse.co.uk.

I wish you all well in these strange times and hope you feel every confidence in your local developing hospice. Thank you sincerely for helping us to be there.

Warm wishes

Janet

Emma Richards, Community Engagement Facilitator at Blythe House Hospicecare, took part in a special fundraising event for the hospice earlier this month, alongside fellow members of an exercise class. They each ran 5km with their families during lockdown – making up a marathon 26 mile total! Emma explains…

We are more than aware that a lot can happen in a week. We have heard of amazing gestures of generosity in times of such adversity. I would like to share with you how touched I was to hear the HIT class I attend was going to hold a fundraising event and it had been decided that Blythe House Hospicecare would be the recipient.

Jo Torr, who organised the fundraising event, said: ‘I wanted to organise and participate in this relay marathon in aid of Blythe House Hospicecare, as the care and love that hospices provide to families is second to none. Their whole ethos is to create a loving, supportive and peaceful environment for the patients and loved ones at a stressful and emotional time.’

Participants volunteered within minutes of a text going out from Jo. My boys volunteered to participate and I agreed to accompany them. I immediately responded to the team with the following message:

‘A huge thank you in advance. It is such a challenging time for all charities who continue to provide front line care in the community, for the community. In the light of the COVID-19 outbreak, I have listened to patients and carers in the Living Well service, who have had their support network removed overnight with social distancing. More recently, I have been redeployed to the Hospice at Home team. I have seen immediately how much our care and compassion impacts so positively on the patients and carers that we listen to and visit. We have never been needed like we have now. On behalf of Blythe House, I thank you from the bottom of our hearts.’

With the lockdown at that time only allowing for an hour of outside activity, Jo decided on the relay idea; 3 groups with 3 participants in each group all scattered over the High Peak. The run commenced at 11.00 a.m. on Sunday 3rd of May. When each of the groups completed their 5k distance, they texted the next participant. I was moved with joy at the messages of support that began to pour in from everyone once the relay had been completed.

Donna said: ‘I felt it was a privilege to run in support of Blythe House, because not only was it a wonderful way to join with my running friends in our relay event, but also to connect with the Blythe House community. It is important to reach out and connect, particularly during this time of isolation. You are all in our thoughts and hearts.’

Even more amazing to think that it took only one week from the conception to completion! Two days after the relay marathon, we have raised an amazing £1,005 and still counting.

Georgie said: ‘It is lovely to do something positive and worthwhile with everything that is going on in the world. I am going to bed feeling happy that we did something that will make a difference.’

Torr de Force have been blown away by the generosity of everyone who has taken the time to donate. I would like to present to you all the Torr de Force team: Jo Torr, Georgie Swift, Nicki Horry, Aga Bickford, Alexandra Sheldon, Miriam Fanshawe (who then had to volunteer her husband Richard, due to an injury – bless you for standing in last minute to allow this to go ahead!), Donna Wood, Noah and Asher Richards (my boys), and of course me following up at the end!

When a group of ladies (and men/boys) come together and unite, we are unstoppable! What a formidable Force indeed!

As Blythe House CEO, Janet said: ‘You are hero’s!’ – I couldn’t agree more!

I would like to finish with another quote from Donna: ‘We are a community not just individuals’.

These sentiments are so meaningful/profound, as the feeling is replicated by Blythe House Hospicecare. We are there for the community but equally the community is there for us. We should all take pride in recognising we are so valued for the crucial role we are playing in our community.

Meet the team – Ruth Brown, Hospice at Home Manager

Since the Hospice at Home service’s inception in 2016, we have supported more than 300 people to die at home with their families and friends by their side. Our professional and compassionate healthcare assistants have delivered over 30,000 hours of day and night care.

Ruth Brown, Hospice at Home Manager, explains more about its initial set-up and how important the service is, in our rural community where home-based end of life care is so very much needed.

I have held the position of Hospice at Home Manager for over three years. My previous nursing background was firstly as a community healthcare assistant, then as a qualified nurse, district nurse and finally Community Matron, all with the NHS and predominantly within the community setting.

It was important to me to conclude my career using as many of my skills and attributes as possible, with my passion for good end-of-life care. My niece saw the advert for my current post and rang me to say that she had found me my perfect job, she knows me so well. I was overjoyed when successful; I believe Janet’s (Dunphy, CEO) ears are still ringing from my screams when offered the job!

A Hospice at Home service had been a dream for Blythe House Hospice following the legacy left by Stan Blythe 30 years ago. Reverend Betty Packham, the founder of the hospice, saw the beds in people’s homes as a solution to delivering quality end-of-life care in our community. We have brought dying back into people’s homes and into the community where it belongs, and for many patients where there is an expected death, a reduced likelihood of being hospitalised and their death medicalised. We enable many patients to come home from hospital or other inpatient units, to die at home if that is their choice.

In my previous roles, end-of-life care was my specialism; I worked with motivated professionals where values were shared and together we provided outstanding care. I believed that I could re-create a similar culture and philosophy here at Blythe House Hospicecare, and Janet shared my enthusiasm and passion for good end-of-life care. We made an instant connection in parallel-thinking and goal setting, a great deal of ground work had been done before I began; it was down to me to develop a team, build a service with high standards of care delivery and to promote our service in as many settings as possible, to imbed timely referral to our new service from GP practices, district nursing teams, hospitals and hospices.

If I am honest, I wasn’t sure how quickly we might grow and those first couple of weeks we held our breath but referrals came in, slowly at first but then more rapidly. We have now accepted 410 referral s and have recorded 303 deaths with 92% achieving death in their preferred place. We currently have 30 patients receiving care.

I must pay tribute to my colleagues Sam Hanley [Hospice at Home Co-ordinator] and Kathy Ashby [Hospice at Home Assistant], and the wonderful team of healthcare assistants who deliver this high quality service. They are respected and supported; in recent conversations they repeatedly talk of their love for the service and their privileged position. They appreciate the training and supervision we deliver to ensure we are a specialist service with gold standard outcomes.

We continually evaluate the service and receive wonderful comments from our patient’s families and friends.

It has been an amazing three years and the success of the service could only have been a dream in the beginning. I am very proud of what we have achieved together and can’t wait for the next stage of the journey in the hope of reaching every patient in the last year of life across the High Peak, and beyond that, to share and imbed our model of care across the county of Derbyshire.

How did you get involved with Blythe House Hospice?

I originally came to Blythe House as volunteer receptionist, I also provided admin support to the counselling team. A position became available in The Volunteer Support Team and I was successful on application. In December 2015 I was asked if I would like to support the new Hospice at Home service for 10 hours per week! This soon became my sole role and I now work 30 hours per week.

What does your role involve?

My main task is coordinator for Hospice at Home which involves arranging care for patients in their own home with our team of lovely healthcare assistants. The care can range from a couple of hours to an overnight stay, throughout the High Peak. We currently have 26 patients actively receiving care and 25 healthcare assistants. I usually make arrangements for over 400 visits a month.

What do you enjoy most about working here?

Every day is a challenge that keeps me on my toes; we are a very busy office and fast paced. All the hospice staff, volunteers and patients are just so lovely and I know this is often said, but we are like one big family.

What have you learnt as a result of volunteering and working at Blythe House?

Although I volunteered here, I wasn’t looking for a paid position, so I suppose being open to something different is a good lesson. I’m so glad I took that decision as I wouldn’t be doing what I do now if I hadn’t, and actually, I think this is the role I was always meant to do.

What would you say to inspire others to find out more about Blythe House and the services it offers?

Come and visit us! The biggest misconception when I speak to people about the hospice is that it’s a sad place… Just 15 minutes in the hospice will show you that it is such a positive happy place!

How exiting we can celebrate the past, the present and the future… and we plan to! Look out for all the opportunities to tell your story and celebrate with us.

Blythe House Hospice started because of our wonderful Rev Betty Packham who cared for parishioner Stan Blythe in her home until he died. Stan left Betty a £1000 legacy, and she decided to start a service that would support people in the High Peak affected by life-limiting illness.

Somewhere in one small room, some special people had a vision and created Blythe House Hospice. The community responded with donations of time and money, volunteers for service provision and the Board of Trustees. And it is both of those groups who have been the backbone of Blythe House Hospice. Trustees such as John McNamara and Dr Simon Cocksedge have devoted decades to Blythe House Hospice, Pat Holland has raised over £100,000 with the marvellous Hallé events. Our Chairman Tim Mourne works tirelessly, you will see him at the Hospice and at every event, both driven and compassionate.

And a large number of volunteers have been here since the start, or for decades, doing everything and anything to drive us forward and keep services running. We have seen our income generation teams blossom and grow because of that. We know that if the money stops we stop; it is our volunteers and the generous public that makes sure that it doesn’t stop. They bring warmth, laughter, smiles and so much love into all they do. Their pride is palpable it is the pulse of the organisation.

Many professionals have worked across all areas with passion and enthusiasm to bring us where we are, whether you are here now, retired or developing your career somewhere else, whether I have met you or not, I thank you sincerely.

We are all shaped by our experiences and it is the people, spirits and experiences within Blythe House Hospice which have given it that special feeling; the one that wraps around you as you enter. It’s bright, it’s warm and it’s spiritually safe however complicated and difficult life may be for people. Throughout change, that vital essence has been nurtured. To stay the same in health care means, paradoxically that we must endure change. It is that well known fact and the climate of austerity that are always our challenges. We have to be able to continue to provide the services needed by our community, changing where we need to and constantly nurturing is how we achieve that.

A 30 year history has shown that we see three generations of people, because we care for adults and children, we may see grandma and grandson. Families know us and we know them, one of the magic elements of a small community; connectivity. The medical friendship of Dr Sarah Parnacott, Consultant in Palliative Medicine; Pauline Love, End of Life GP; and all our GPs and District Nurses; the team at Ashgate Hospicecare have been a part of the connections that ensures excellent, well communicated care.

The volume and quality of work we have delivered evidences how much these services are needed, we know that most care will be delivered in community. Our mission at Blythe House Hospice is to keep this community self-reliant and work with our partners and colleagues in primary care to avoid hospital admission and keep cancer support and end of life care close to home. The generosity of the public has brought us this far, I’m confident that together we can support the next three generations, my team and I are very proud to be taking us forward.

If you are reading this you have some interest in what we do and likely support us, you may be one of our fabulous volunteers, so I want to take this opportunity to say thank you, sincerely thank you. We couldn’t do this for you without you.

I want to finish where we started with Rev Betty Packham, still close, still giving of her time and spirit – that matters enormously Betty, you are much loved and respected.