We are looking forward to commemorating Dying Matters Awareness Week from Monday (10th May), to help open up the conversation around death, dying and bereavement.
Dying Matters explains: ‘This year, the week will focus on the importance of being in a good place to die.
‘There is no right or wrong place to die; it will be different for everyone. But it is important for families to think about it, to talk about it and to plan for it.
‘At Dying Matters, we want people of all ages to be in a good place when they die – physically, emotionally and with the right care in place. Getting there means having some important conversations and taking some careful decisions.’
In our hospice reception area, we have a ‘What matters to me’ board, where we’re inviting patients and visitors to write down their thoughts, ideas and opinions for what matters to them at the end of their lives.
Some suggestions include:
Where would you like to die?
How would you spend your last day in this world?
How would you talk about death with your children?
What does your funeral look like?
How would you like your body to be dressed?
What do you want your coffin to be like?
What music you would like to play at your funeral?
Where would you like to visit before you die?
Where would you like to be when you die?
Many women these days have a ‘birth plan’. But what would be in your ‘death plan’ and when would you start writing it?
How would you like to be remembered?
If you’re not heading to visit the hospice next week, we’ve set up a digital board, so you can share your ideas online. To do so, just follow this link and double click anywhere on screen to write your own anonymous comment: What matters to me.
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.
https://blythehousehospice.org.uk/wp-content/uploads/2021/05/RS55_DyingMatters_AW21_Social_1_2050x780_FB.jpg7802050Rebecca Mellorhttps://blythehousehospice.org.uk/wp-content/uploads/2019/09/blythe-logo-2019.pngRebecca Mellor2021-05-05 13:57:162021-05-05 14:02:05What do we tell the children? Staff blog to commemorate Dying Matters week
People across the High Peak and Derbyshire Dales who are looking to give something back to their community and support a local charity, are invited to find out more about rewarding opportunities to volunteer in hospice shops.
We are recruiting volunteers to support their shops in Bakewell, Buxton, Chapel-en-le-Frith, New Mills and Whaley Bridge.
The retail outlets are responsible for bringing in over a quarter of the money needed every year to provide free palliative and end of life care to local patients.
On some days, the shops are not able to open or have to close early due to a limited number of volunteers.
Volunteers at the shops help with a range of tasks including sorting donations, displaying items for sale, pricing stock, managing tills and money, and supporting customers.
Alex (right), with mum, Brenda (middle) and auntie, Hilary (left) who are hospice retail volunteers
Alex Clark from Buxton volunteers at the hospice shop in her hometown every week. She said: ‘It was back in 2011 when my mum, Brenda noticed that Blythe House’s shop was closed on Wednesdays because unfortunately the team just didn’t have enough volunteer capacity to be able to open it.
‘I had recently been made redundant and mum said to me: “We could do that!” so we got in touch with Blythe House, and offered our support.
‘Volunteering for Blythe House is really good fun and sociable, everyone is so friendly. You can see the results here and you really know that you’re doing something to help. I know several people who’ve benefitted directly from Blythe House; nobody wants to have to access the services here but knowing they are there if they are needed is very comforting and they make a huge difference to so many local people.’
Victoria Wild, Community Volunteer programme manager at the hospice, commented: ‘Without our volunteers, Blythe House and Helen’s Trust simply could not function. Our team of over 250 volunteers collectively donate approximately 590 hours of their time to us each week. They play an integral and vital role, and their support means that we can spend the maximum amount of money directly on care for our patients and their families. We are so grateful for the time and commitment they give.’
https://blythehousehospice.org.uk/wp-content/uploads/2018/11/shop.jpg400600Rebecca Mellorhttps://blythehousehospice.org.uk/wp-content/uploads/2019/09/blythe-logo-2019.pngRebecca Mellor2021-04-26 10:06:112021-04-26 10:06:33Volunteers opportunities to support High Peak and Dales hospice charity shops
Stanley, 10, and Lydia, 6, from Chapel-en-le-Frith started to attend bereavement play therapy sessions at Blythe House in late 2020, after their Daddy, Stuart tragically took his own life.
Lydia, Stanley and Stuart
Lisa, Stanley and Lydia’s Mum, explains: ‘Myself, the children and all the family were devastated by the news of Stuart’s death. I didn’t know how to deliver the news to Stanley and Lydia about their Daddy, but I sought support from Winston’s Wish [a charity that Blythe House works closely with and uses resources from]. The charity provided a book to help me to understand how to explain what had happened to Stuart.
‘Later on that year, several family members and friends suggested I contact Blythe House for some counselling support for the children. Stanley started to attend first, with Lydia beginning sessions not long after. They both just absolutely loved coming here, and made really good bonds with their counsellors.
‘The pair of them brought items to their sessions to show to the counsellors and to talk about, for example teddy bears made from Stuart’s shirts, and cushions that I got them for Christmas with his photograph on them.
‘Stanley really embraced the arts and crafts element of his play therapy sessions. Art was never one of his main “strengths” but he has loved making things that remind him of his Dad. He’s drawn things, made a sand jar with different coloured layers representing different memories, and filled out an activity book called Muddles, Puddles and Sunshine, made especially for bereaved children.
‘He was studying space at school, and during one of his sessions, Stanley made a rocket out of play dough. His counsellor, Annabel asked him questions like “If this rocket could go to visit Daddy, what would it say?”
‘Before he started the counselling sessions, Stanley had feelings of anger and struggled to express his emotions. Annabel supported Stanley to find strategies for how to cope, and now, he seems so much better and much more content.
‘Lydia loved her sessions with her counsellor, Rachel. She made keyrings with coloured sands and enjoyed playing with the doll’s house. I think Lydia just loved having free rein of the play room and enjoyed being able to do what she wanted to in that space.
Lisa with Lydia and Stanley
‘When the children finished their programmes, the counsellors gave them presents including Easter eggs and other treats. It was such a lovely gesture and we were so grateful.
‘We’ve never gone through grief, but as a family we are getting through it together. We haven’t been afraid to share our feelings. The situation has obviously been made much worse with the pandemic and the lockdowns. We haven’t been able to see our family and friends as normal, but we’ve been keeping in touch as much as possible.
‘I truly feel if the children hadn’t have been able to continue going to school – having that routine and seeing their friends – and coming to Blythe House, that they wouldn’t be doing as well as they are doing now. Christmas time was hard, as it’s Stanley’s birthday the week before too, but we made sure to speak about Stuart during Christmas Day with his parents, and we all had a lovely day, despite the sadness of his absence.
‘To other parents or carers of children who may need support, the first thing I’d say is contact Blythe House in a heartbeat. I can’t big up the hospice enough, and I know they’ve had an amazing time. It’s an outstanding, invaluable local service and I feel so grateful and lucky that it’s on our doorstep.’
(Cover photo is artwork created by Lydia during her counselling sessions).
https://blythehousehospice.org.uk/wp-content/uploads/2021/04/Childrens-counselling-feedback-2-small.jpg12811224Rebecca Mellorhttps://blythehousehospice.org.uk/wp-content/uploads/2019/09/blythe-logo-2019.pngRebecca Mellor2021-04-20 13:53:492021-04-20 13:53:49Lisa, Stanley and Lydia’s story
Staff and volunteers from Helen’s Trust, in partnership with Blythe House Hospicecare, cut the ribbon at the new retail outlet on Matlock Street today [Monday 12th April].
The shop stocks a wide range of items including men’s, women’s and children’s clothing; homeware; books and CDs.
Money raised in store will go towards providing free palliative and end of life hospice care in the comfort of patient’s homes across the Derbyshire Dales and North East Derbyshire.
Covid-safe celebrations were well underway as excited volunteers and local customers showed their support, on the day that non-essential retail outlets could re-open following easing of England’s lockdown restrictions.
The shop is the newest addition to Blythe House’s other retail outlets, in Buxton, Chapel-en-le-Frith, New Mills and Whaley Bridge.
The popular high street stores are responsible for bringing in over a quarter of the money needed for the charity to provide free care and services to local patients and families.
Tim Mourne, chairman, and Dr Louise Jordan, deputy chair, of the charity’s board of trustees cut the ribbon to officially open the shop this morning.
Dr Jordan, who is a GP at Baslow Health Centre, said: ‘As a founding trustee of Helen’s Trust, I am delighted to see the charity continue to grow from strength to strength. This year we are celebrating our 20th anniversary, and we’re supporting more people across our local communities than ever before. The new shop will help us to continue achieving and smashing our goals in the future; supporting hundreds of local patients who wish to stay in the comfort of their own home at the end of their lives.’
Tim added: ‘I am so pleased to officially open the new Helen’s Trust shop alongside Dr Jordan. Since the partnership between Blythe House and Helen’s Trust began last year, we have doubled our Hospice at Home clinical output in the face of the Covid-19 pandemic. The shop opening is the latest achievement of our successful charity merger, and we know that our loyal, local supporters will be on hand to back it, by volunteering, donating or shopping here, to support local hospice care now and in the future.’
Sincere thanks go to Bloomers of Bakewell for donating individually wrapped and Covid-safe treats for the special occasion.
https://blythehousehospice.org.uk/wp-content/uploads/2021/04/Helens-Trust-shop-opening-Bakewell-April-2021-4-small.jpg12241632Rebecca Mellorhttps://blythehousehospice.org.uk/wp-content/uploads/2019/09/blythe-logo-2019.pngRebecca Mellor2021-04-12 12:08:522021-04-21 16:28:50New shop raising funds for local hospice care opens in Bakewell
We are celebrating the fifth anniversary of a hugely successful service that ensures local patients can die in the comfort of their own home, if that is their wish.
Staff and volunteers at the launch party in 2016
Since its inception in 2016, Blythe House Hospicecare’s Hospice at Home service has supported over 880 patients, and provided more than 57,200 hours of palliative and end of life care. The service’s official anniversary is Sunday 11th April 2021.
Hospice at Home provides care to patients who are within their last 12 months of life, across the High Peak and Hope Valley. Since its partnership with Helen’s Trust began in September 2020, support now extends to cover the Derbyshire Dales and North East Derbyshire.
During the past year alone, the 24/7 service has enabled over 190 local patients to stay safe at home, when they might otherwise have been admitted to hospital, where no visitors have been allowed.
Helping to alleviate this pressure on NHS services during the Covid-19 pandemic since March 2020, Hospice at Home healthcare assistants have provided over 17,000 hours of care, to patients across 20 local towns and villages.
The service receives referrals for a variety of reasons, which include ensuring a patient can return home from hospital safely; so that a family member or carer can get some much-needed rest; and so patients are able to die in the comfort of their own home, surrounded by their loved ones.
Janet Dunphy, Blythe House Hospicecare and Helen’s Trust CEO, said: ‘We are immensely proud of our Hospice at Home service and everything that it has achieved in its short but staggering lifetime so far. Founded thanks to a generous donation left in the will of a local person, the service has grown and evolved over the past five years, and is seen as an essential provider of the highest quality end of life care by our funders, fellow providers and community professionals.
‘The past year during Covid-19 especially, we have seen the importance of people wishing to stay safe at home, instead of being admitted to hospitals or other in-patient units where no family or visitors have been permitted. Hospice at Home has enabled so many local patients to stay at home, with their loved ones beside them.
‘We are grateful to the hundreds of local families who’ve allowed us into their homes to provide compassionate care to patients who wish to die with dignity in their own, comfortable surroundings. We are looking forward to the next five years and beyond, to continue the Hospice at Home legacy.’
https://blythehousehospice.org.uk/wp-content/uploads/2020/03/Hospice-at-Home.jpg10921500Rebecca Mellorhttps://blythehousehospice.org.uk/wp-content/uploads/2019/09/blythe-logo-2019.pngRebecca Mellor2021-04-06 15:53:052021-04-06 15:53:05Blythe House celebrates five years of Hospice at Home service
We are thanking our volunteers and donors for their unwavering support during the past year.
Blythe House Hospicecare and Helen’s Trust is reflecting on an unprecedented year, as this week sees the first anniversary of the UK’s initial Covid-19 lockdown.
During the past 12 months, the hospice’s fundraising events have been cancelled, and four much-loved shops in Buxton, Chapel-en-le-Frith, New Mills and Whaley Bridge have been closed for the majority of the time. This has reflected hugely in the charity’s capacity to raise vital funds for local care. The hospice is more than £190,000 under the budget it would have expected to receive had, its four shops been open as normal between April 2020 and now – that’s over 55% down on expected income.
Despite this, staff and volunteers have never stopped being there for the local community. The Hospice at Home service has enabled over 190 local patients to stay safe at home, when they might otherwise have been admitted to hospital, where no visitors have been allowed. Helping to alleviate pressure on NHS services, hospice healthcare assistants have provided over 17,000 hours of care since March 2020, to patients across 19 local towns and villages.
Blythe House’s Community Hub has continued to provide specialist palliative care and support to patients and carers. As well as dealing with patient’s understandable concerns about the pandemic, the team has answered difficult questions around changes or cancellations to treatment plans, for people who are living with, or dying from, life-limiting illnesses such as cancer.
Alongside clinical staff, the hospice’s team of 42 community volunteers has been available seven-days-a-week to support over 200 patients and local people who’re elderly, vulnerable or isolated, with tasks including shopping, medication deliveries, pet walking and socially-distanced garden visits. Volunteers have donated over 2,500 hours of their time to provide more than 3,400 companion phone calls and 1,140 Covid-safe visits.
Hospice counsellors have continued to provide Covid-secure meetings for adults, and play therapy for children, who’re experiencing bereavement throughout the pandemic.
Janet Dunphy, hospice CEO, said: ‘We simply could not have managed to continue providing our high-class services and care if it wasn’t for the support of our local communities. Our amazing volunteers have donated so many thousands of hours of their time to give something back. Supporters have thought up unique and special ways to raise vital funds for hospice care, during what has been a stormy year for everyone. We are so incredibly grateful for everyone’s support and I mean it when I say that Blythe House and Helen’s Trust would not be here without you – thank you sincerely.
‘We know that healthcare will have to be delivered differently in some areas due to the effects of Covid; but we are more than ready to face those challenges. We will be here, as we always have been, to support those people in our community who are bereaved, who are affected by life-limiting illness and those who are suffering due to long Covid.
‘We have a newly-revamped, modernised, Covid-safe building, with a multi-disciplinary team to help as many people as possible. Our Hospice at Home service continues to evolve as more and more people choose to stay at home. We are committed to supporting hospital discharges and preventing in-patient unit admissions. We’re here to help, and here to stay.’
The hospice receives just 21% of its funding from the government, and must raise the remaining costs via fundraising events, voluntary donations and its charity shops.
Local people can support palliative and end of life care in their community by setting up a regular monthly donation of just £5. Over the course of a year, this money would help to fund compassionate healthcare assistants to provide the highest quality end of life care to a local patient in the comfort of their own home – that equals just 16 pence per day!
https://blythehousehospice.org.uk/wp-content/uploads/2021/03/Blythe-House-Hayley-Spencer-2-small.jpg10261947Rebecca Mellorhttps://blythehousehospice.org.uk/wp-content/uploads/2019/09/blythe-logo-2019.pngRebecca Mellor2021-03-18 12:16:532021-03-18 13:46:23We give thanks to volunteers and supporters after a year of lockdowns
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.’
https://blythehousehospice.org.uk/wp-content/uploads/2020/08/DSC_0474-feat-image-scaled.jpg10712560Rebecca Mellorhttps://blythehousehospice.org.uk/wp-content/uploads/2019/09/blythe-logo-2019.pngRebecca Mellor2021-03-11 10:37:252021-03-11 10:37:52Celebrating unique career of a special lady as Ruth gets set to retire
People across the High Peak and Derbyshire Dales are invited to ‘get their glow on’ to support local hospice care.
Blythe House Hospicecare and Helen’s Trust are hosting their second annual Glow Twilight Walk on Saturday 15th May – and this time, it’s virtual!
People can sign up to take on their own 10k night-time walk, and help to raise vital funds for palliative and end of life care across the community.
Blythe House and Helen’s Trust provides free care and support to people across the High Peak, Hope Valley, Derbyshire Dales and North East Derbyshire who are affected by life-limiting illness and bereavement.
The Hospice at Home service has provided over 17,000 hours of care to more than 180 local patients in the comfort of their own home since the start of the first national COVID-19 lockdown in March 2020.
The Virtual Glow Twilight Walk follows the incredibly popular inaugural event back in 2019.
Sue Boulton (second from left), from Buxton, took part alongside work colleagues in memory of a friend and co-worker. She said: ‘It was about taking part in something that would make a difference to Blythe House. To help raise that much needed funding, enabling them to give support, advice and care to everyone in our community that needs it.
‘It’s all about fun, dressing up and most importantly being part of an event that paid tribute to those we have lost. I joined my old work pals to remember our dear friend and colleague, Karen Byrne.
‘We can’t all be together for 2021 twilight walk, but we can all join together in spirit. Whichever way you decide to walk, virtually with friends, with your partner or family bubble. It’s all about having fun, raising money and remembering those loved ones fighting their own battle or for those that are no longer with us.’
Becca Gregory, fundraising and events coordinator at Blythe House and Helen’s Trust, added: ‘We are so excited to be lighting up the night once again in aid of local hospice care. This time, due to COVID restrictions, participants can get involved with their household or support bubble – and see how many other Glow Twilight walkers they can spot along the way! We hope people will get involved across our community – even much further afield – to support the important work undertaken by our amazing hospice clinical teams and volunteers every single day.’
https://blythehousehospice.org.uk/wp-content/uploads/2021/03/GLOW21-FACEBOOK.png9922608Rebecca Mellorhttps://blythehousehospice.org.uk/wp-content/uploads/2019/09/blythe-logo-2019.pngRebecca Mellor2021-03-09 08:52:462021-03-09 08:52:46Light up the night in aid of local hospice care
Jackie’s husband Rob was first introduced to Blythe House in 2019 after finding out the previous year that advanced prostate cancer had sadly spread to his bones. Rob gained one-to-one advice and support at first, but as his health deteriorated, he began receiving care in the comfort of his own home.
His wife, Jackie, explains more: ‘After struggling on with severe back pain for some time, seeing a GP and a physiotherapist, Rob was diagnosed with advanced prostate cancer in spring 2018. Unfortunately, the cancer had metastasised and spread into his bones.
‘I persuaded him to go to Blythe House, where he had face-to-face meetings with Karen Clayton [hospice nurse], who he had a huge amount of respect for. He also attended the hospice’s monthly coffee mornings where he’d chat to Karen and receive valuable advice. On two different occasions, I found myself struggling or at the end of my tether and I just walked round to Blythe House and ended up speaking to Karen, and Louise Furmston, [community engagement lead], who were both fantastic. Blythe House is not just for people who are ill; carers and family members needn’t be afraid of reaching out for support.
‘Rob did really well throughout 2018, but around Christmastime, he became really ill; started getting pains in his shoulder and had episodes when he was unable to move. During 2019, he was in and out of hospital and in April 2020, at the height of the first national COVID-19 lockdown, he had a very severe episode and our doctor recommended Hospice at Home support from Blythe House.
‘The team sorted us out completely because we just couldn’t cope physically. They arranged to visit us twice a day in the mornings and evenings, to help wash and dress Rob or get him ready for bed. He recovered a little bit and we decided that we didn’t need the evening sits anymore, but healthcare assistants still came every morning.
‘It is a very lonely feeling seeing the person who you’ve lived with for more than 50 years deteriorate so quickly and become so frail. Rob was a very active and independent man – he did decorating, plastering, plumbing, electrics, DIY. He found the limitations caused by his illness very frustrating and upsetting. It was lovely to have different people come into our home, and for Rob to have someone, other than me, who he could chat to, as we were unable to see friends and family because of COVID. It was also great for me because it gave me much-needed time out as a full-time carer, and different people to talk to about worries or concerns.
‘I can’t begin to imagine how we’d have coped without Hospice at Home. I am quite tough-skinned but I sat and cried privately on many occasions because I just didn’t know how we’d have managed. It was just wonderful to know someone was there. Dr Sarah Parnacott [consultant in palliative medicine], was amazing. I text her one morning with a query regarding Rob’s medication; she replied straight away, and an hour later she was on my doorstep.
‘On the morning that Rob died, Julie, one of the healthcare assistants, had been round to shower and care for him. After she left, I went outside to hang some washing when I heard an almighty crash. I found him in a heap at the bottom of the stairs and called an ambulance straight away. I wasn’t allowed to go in the ambulance with Rob to hospital due to COVID-19, but after advice from Dr Parnacott, we had completed a ReSPECT [Recommended Summary Plan for Emergency Care and Treatment] form and this was passed to the paramedics. Soon after, I received a call from a team member at Stepping Hill who informed me that Rob had become unconscious in the ambulance; he asked me to get there as soon as I could.
‘When I arrived at hospital, I had a chat with the consultant who told me that Rob had multiple catastrophic injuries and we decided not to lift his sedation. He quietly slipped away on the 30th August 2020. As tragic as his death was, I knew that it was the best thing. He was so miserable and frightened about what would happen to him over the coming weeks.
‘We have always been very healthy people – we didn’t do doctors, surgeries or help – so it hadn’t occurred to us to seek help from Blythe House. If it wasn’t for our doctor, and the hospice team saying “you can do this/ you can have this,” we wouldn’t have known. It would not have occurred to us to say “help!” without someone prodding us. What I’d say to other people who may be in a similar situation to ours, is just to be aware of the amazing services on offer at Blythe House; don’t hold back from asking for help. It’s not just the palliative and end of life care, but genuine advice and support too.
‘I’d like to say huge thank yous all round; we could not have managed without Blythe House; there was always someone to talk to, and to provide such important care and support.’