Helen’s story

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Blythe House and Helen’s Trust cared for Helen’s beloved dad, John, in the comfort of his home alongside DHU Healthcare’s palliative care urgent response service, before he sadly died in January 2023. His family did everything in their power to keep John at home, as ‘under no circumstances’ did he want to die in hospital.

John, from Pilsley, was diagnosed with oesophageal cancer in June 2022, after a long period with a niggling, ongoing cough and phases of feeling very unwell.

New roaming car service
Since the Covid-19 pandemic, the need for Blythe House and Helen’s Trust’s Hospice at Home care has never been more apparent. GP surgeries and hospital services are busier than ever, and many more people, like John, wish to be cared for in the sanctuary of their home.

This increased demand means we have to build upon the service to ensure that we can respond quickly to all those who need our support. Later this year, we’re set to launch a brand-new roaming car service to complement our hugely successful Hospice at Home team and work closely with DHU Healthcare’s palliative care urgent response service, to provide even more care to local people who need it.

The new roaming service will see expert nurses with palliative care experience, and compassionate healthcare assistants, support patients across North Derbyshire from 10pm to 7am, to administer medication, manage symptoms and provide nursing care; keeping patients at home, and out of hospital.

This means that if a local patient experiences a decline in their circumstances and needs nursing support anytime during the night, they will have access to the Hospice at Home team, even when they don’t have an overnight hospice care package planned.

John’s diagnosis
Helen explained: ‘As a large family, cancer is something we’re quite familiar with. We’ve experienced most cancers; and most of them have been terminal. I had my own taste of breast cancer in 2010.

Dad contracted Covid-19 and was quite unwell in late 2021, but during the winter of 2022 he developed a niggling, ongoing cough which doctors put down to being a post-Covid cough. He had chronic obstructive pulmonary disease, severe asthma, and was taking medication for his breathing; so the things that medics were saying were not unreasonable.

‘In February 2022, Dad confided that he thought he might have cancer. He said “although they’re telling me one thing, I think it’s more than that.” If there’s one thing after this experience that I’d say to anyone who has a hunch that something is not right, just keep going back. I think sometimes there is an element of not wishing to be disrespectful and that you don’t want to doubt a medical professional’s knowledge and experience, but just don’t be afraid to question their conclusions and have your say.

‘Later, in spring, Dad went to visit my sister, Sara at her home in Australia. He was thinking that the sunshine and warmer weather might help his condition improve, but sadly, unfortunately, it got worse. When he came home, he went back to the doctor and underwent tests and scans, where he was diagnosed with terminal oesophageal cancer. He didn’t have long left, but he didn’t want timelines and he didn’t want to know.

‘Dad made a quick decision early on that he wanted to tell the people he was closest to, and to spend his remaining time with people of value. Family was always important to him, and Dad said he wanted to leave us all with something to laugh and smile about. Dad started to set goals of things he wanted to see and do. He wanted to reach birthday milestones for Sara and I; to see my son, his grandson, finish his GCSEs and go to college, and to see my niece achieve educational milestones in Australia. Dad had been a member of the Royal Antediluvian Order of Buffaloes since 1974, so fundraising, charity and the social aspect of the group was also very important to him.

‘Dad had previously completed a ReSPECT form, so that healthcare professionals and family could see and respect his wishes. He’d said that under no circumstances did he want to die in hospital. As a family, we of course agreed, and we did everything in our power to keep him at home. When you’re trying to care for someone, it’s understandable that you might have your own questions. Dad gave permission for medical teams to answer our questions. He didn’t want to be in the room to hear the answers, but he desperately wanted us to meet his need to be at home, so he knew we needed to ask those important questions. I would say don’t ever be afraid to ask those questions; they are so vitally important when you’re looking after a loved one who is so poorly.

Helen and John on Helen’s wedding day

Having important conversations
‘In October, the writing was on the wall and we thought that Dad didn’t have very long left. The cancer had progressed incredibly quickly and at that point we thought it might be a matter of days. We used time to chat through all Dad’s wishes and thoughts. He answered all my questions and there are no conversations that we didn’t have. He told me the answers he’d give to me if I was to ring him for advice today. We also knew exactly what we were doing at his funeral; we had strict instructions, with hard and upsetting conversations, but they meant we knew exactly what he wanted. It’s not a nice topic but don’t be afraid of asking those questions to make sure you get it right for your loved ones.

‘Dad was a very proud man; he loathed accepting help, I think because of his army background. There was never any “I love you’s” but you never doubted that he loved you. There was always lots of hugging. He was so mortified that he was spending all of his time in his pyjamas, including seeing family and friends whilst so “underdressed,” so we used to have pyjama parties to help Dad maintain his dignity.

‘Sara came over from Australia to be with Dad, and he soldiered on and on – he was really quite determined. She was only supposed to be staying for a few weeks, but she returned home to Oz in December for Christmas, knowing that she wouldn’t see him again. My birthday is 23rd December and I’ve had five birthdays in my lifetime where family members or friends have died. Dad was determined he wasn’t going to die on 23rd December, and he kept asking my Mum, Doreen, and my uncle what the date was. We were all devastated by what was happening to Dad, and we were so incredibly sad, but we kept laughing and joking. I think our family has got a fairly black sense of humour.

Support from the hospice and DHU Healthcare
‘On 30th December, I travelled back to Mum and Dad’s from my home in Northampton, and nothing prepared me for walking into their house. Until this point, my Mum had cared for Dad on her own. She was absolutely broken and we needed support. We called the NHS 111 service and were referred to DHU Healthcare’s palliative care urgent response service.

‘The minute the team walked into the house, it was like they were part of our family; like we’d always known them. It is definitely a skill walking into a house with strangers at a critical time in their lives, and fitting right in. They did not make decisions for us, but they made sure we had all the information we needed to make informed and focused decisions about Dad’s care; all whilst including Sara who was on the other side of the world!

‘We found that the cancer had spread to Dad’s brain, which was making him have seizures. We needed to keep him peaceful and relaxed, in order to keep him at home. We knew that if Dad became agitated or in pain, he may need to be transferred to hospital; something he desperately didn’t want.

John and Doreen

Amazing care and respect
‘Jill from the palliative care urgent response service could not believe that Mum had been caring for Dad on her own. She referred us to the Hospice at Home service at Blythe House Hospicecare and Helen’s Trust, and a healthcare assistant (HCA) came out to be with us. She was lovely; she said, “I am here now, go to bed now.” She was quite firm and told us to sleep whilst she watched over Dad.

‘The care and respect she showed him, and the dignity she helped to maintain was just amazing. She was calm, respectful and safely took care of Dad’s needs, but she was there for us as much as Dad too.

‘Dad died peacefully at home on 3rd January 2023, with us by his side. I can’t quantify the care and support we received from the hospice and from DHU Healthcare which enabled Dad to stay at home; there aren’t enough words to truly explain the amount the teams did to help us. They just fitted with our thinking; they did what we wanted to do, and they understood what we wanted. We wouldn’t have known to ask for his care, because we wouldn’t have known it was there.

‘We have since given £700 in donations from Dad’s funeral to the hospice; and Mum finds solace in supporting the hospice’s Bakewell shop with donations. She loves the idea that she is able to support the work of the hospice to give care to someone else like Dad; that there will be someone to answer the phone when someone needs help.’

Helen also undertook the hospice’s Millers Dale bridge fundraising abseil in May 2023, alongside Richard, her cousin, raising over £650.

Helen explained: ‘I am overwhelmed at the support we have had. We are incredibly grateful. What we have achieved so far as a family, I am sure dad would be proud.’

Find out more about the Hospice at Home service.

Find out more about ways you can support Blythe House and Helen’s Trust.

Header photo – John with Helen (left) and Sara (right)

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Dennis’s story

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Family man, Dennis Cooper was a ‘practical joker’ and had a real ‘zest for life.’ He was truly adored by Nancy, his loving wife of very nearly 70 years, his six children, 17 grandchildren and 20 great grandchildren.

Our Hospice at Home service started to provide care and support to Dennis in September 2021 in the comfort of his home in Hope, after a long spell of time spent in hospital due to a variety of complications following treatment to remove several gallstones that he had retained in his bile duct.

Whilst he was unwell, alongside his devoted family, Dennis was helping to organise a fundraising event for the hospice to thank the team for all its support.

The family fun day was due to take place in September 2022 for Dennis’s 91st birthday, but incredibly sadly, Dennis died on 12th June, just a few short months before he was due to celebrate the big day, and 70 years of marriage to Nancy in October.

Dennis’s family continued to organise the fun day, and it went ahead as planned in Dennis’s memory at Hope Works Social Club (at Breedon’s Hope Valley Cement Works) in August, raising a staggering £6,494 for local hospice services.

Here, Nancy, and two of Dennis’s daughters, Christine, and Dawn, explain more about their ‘determined’ and beloved husband and dad, and how the hospice supported their family…

Christine said: ‘Dad was Mum’s primary carer and looked after all the housework including cooking, cleaning, washing, ironing, gardening, and food shopping. He was very active for his age and was never keen on being in hospital.

‘Dad had undergone surgery to have his gallbladder removed, but in August 2021, he started to have very severe stomach pain. He underwent tests at Chesterfield Royal Hospital which found that he had a few gallstones on his bile duct. The surgeon suggested a procedure that would effectively blow the gallstones out, which carried a 2% risk.

‘Dad underwent the procedure but unfortunately it didn’t quite work out and the treatment caused aggravation to his pancreas and further complications. Doctors didn’t discover this issue for several days, and it meant that sadly Dad, who hated hospitals, spent nine weeks in hospital.’

Dawn said: ‘During this time, Dad totally lost his appetite, suffered from sickness and diarrhoea, and he was picking up all sorts of infections. He was incredibly vulnerable; hallucinating at times and even fell out of bed at one point as he thought it was on fire. He had a catheter, but it was prone to infections which left him in a lot of pain. Dad was so frightened; he was ringing us in the middle of the night, begging us to take him home.

‘Dad’s condition was improving but he was still very unwell; he had lost about two stone in weight at this point; however, we were finally allowed to bring him home. We had no training or support on how to care for Dad; we were all just taking it in turns and doing our very best. Sometimes, he would literally be screaming in pain because of his catheter; we really needed support.

Nancy said, ‘As soon as Dennis had returned home, my children and their partners had set up a rota between themselves to care for him during the day and overnight, taking it in turns to look after him, which they found both stressful and very emotionally draining’.

Christine continues ’Dad was supposed to receive a 6-week care package but unfortunately that never happened. One evening when Dad was ill, we had to ring 111. The nurse that attended was so good. She could see how exhausted and anguished we all were and said she would contact Blythe House and Helen’s Trust, to try and arrange some help. This was the start of our relationship with the hospice. They gave us support for two hours per day, which enabled us to go home and sleep, or take Mum out for a break.

‘Our GP, Dr Pelc from Hope Surgery, later applied for funding which then resulted in extra hours. The Hospice at Home team started providing two full nights of care per week and two hours during each day. Every single one of the team was brilliant; it was a huge relief to have their support, and they became our friends.’

Christine said: ‘The team took us from virtually breaking point to us being able to function at a more acceptable level. They would have a brew, a chat, encourage and support Dad to wash and sometimes take a shower, and supporting my Mum too, who had recently had a hip replacement. Dad was a very proud and private man; he was very determined, and he wasn’t a quitter – he had a lot of willpower. The healthcare assistants (HCAs) cared for him a way that helped him to maintain his dignity. Through chatting to the HCAs, Dad discovered that he used to work with one of their dads at Ferodo in Chapel-en-le-Frith, so they had lovely, long conversations about that shared interest.’

Dawn explained: ‘Dad sadly continued to get chest infections, and infections to his catheter. He became weaker and was put on steroids as he wasn’t eating, but they gave him the “munchies” and we’d find him sneaking out of bed to get chocolate from the kitchen! We managed to get him out and about a bit, including visiting the Chatsworth farm shop and visiting family at Christmas.

‘Dad had spent his 90th birthday in 2021 in hospital, and although the staff made it nice for him by decorating his bedside, it wasn’t the same as being at home. So, we decided that for his 91st birthday, we’d organise a party and a fundraiser for the hospice. It was a good focus for Dad and a really good motivator. His main concern was raising the money and he kept saying: “What are going to do if we don’t raise enough money!”

‘Dad’s health continued to deteriorate so instead of waiting for his birthday, we decided to bring the event forward to August 2022. My brother runs the catering department at the social club, so we decided to host it there, and had plans for live music and games. We’d made all the old-fashioned games ourselves and Mum would come and watch us making them.

‘Later, Dad contracted another chest infection and was taken into Stepping Hill Hospital. Tests whilst he was in hospital confirmed that he had cysts all over his liver. He was begging us again to get him home, but sadly he caught Covid-19 and he had to be transferred to a Covid ward. He said: “I’ll be walking home if you don’t take me!” He didn’t want to die but he wasn’t afraid of dying. At this point, he said he’d had enough, and we knew he wasn’t going to get better.

‘We managed to get Dad home and he was given end of life medication. The Hospice at Home team stepped in again to support Dad and us all as a family. Dad died on 12th June 2022 in the comfort of his beloved home. We were all there with him. He died as peacefully as he could’ve been, he went to sleep and didn’t wake up. He had a good life, including lovely cruises with my Mum to the Caribbean, (despite never wanting to go but loving them!), and holidays to St Ives in their caravan. They also shared a passion for ballroom dancing and won many awards back in their day.’

Christine said: ‘It’s hard to put into words what the care from the Hospice at Home team meant to us as a family. It enabled Dad to stay at home, where he wanted to be. He used to beg us: “Don’t let me go into a nursing home or into hospital.” The healthcare assistants saw us at our best and worst times; they’d often find us crying at the kitchen table, and they’d say: “Don’t you worry, you have a good cry!” We missed them a lot after Dad’s death. We tell everyone we know about the service and what it did for us.’

Dawn added: ‘If we’d have carried on caring for Dad the way we were doing, whilst supporting Mum too, it would’ve been a risk to our health – it was physically and mentally draining. We couldn’t have kept going, but the trouble is you don’t know how long you’ve got to keep going. The hospice has offered bereavement support to Mum following Dad’s death.

‘The fundraising day was a huge success, and we are so proud to have raised such a fantastic sum of money for the hospice. Organising the event protected us and helped us to get through Dad’s death.’

Find out more about how you could support the hospice.

Learn more about the Hospice at Home service.

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Meet the team – Paula Elliott, Hospice at Home Roaming Car Service manager

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Paula Elliott joined the team in February 2023 as the manager of our brand-new Hospice at Home Roaming Car Service.

Since the Covid-19 pandemic, the need for Hospice at Home care has never been more apparent. Our Hospice at Home service celebrated its seventh anniversary recently, and since its launch in 2016, the total hours of care provided per year has increased by almost 180%. GP surgeries and hospital services are busier than ever, and many more people wish to be cared for in the sanctuary of their home.

This increased demand means we have to build upon the service to ensure we can respond quickly to all those who need our support. Later this year, we’re set to launch a brand-new roaming car service to complement our hugely successful Hospice at Home team to provide even more care to local people who need it.

Paula explained: ‘The service will see expert nurses with palliative care experience, and compassionate healthcare assistants, support patients across North Derbyshire from 10pm to 7am, to administer medication, manage symptoms and provide nursing care; keeping patients at home, and out of hospital.

‘This means that if a local patient experiences a decline in their circumstances and needs nursing support anytime during the night, they will have access to the Hospice at Home team, even when they don’t have an overnight hospice care package planned.’

Prior to starting her role at the hospice, Paula worked as a nurse for almost three decades at local hospitals in Macclesfield, Stockport, Tameside and Glossop.

She said: ‘After working for a couple of years at a nursing home as a nursing auxiliary*, I started my nurse training in 1991 at South Manchester College of Nursing.

‘After qualifying as a registered general nurse in 1994, I worked briefly at Macclesfield Hospital. I then moved to the Cavendish Hospital looking after patients with continuing healthcare needs where I gained a good foundation and understanding of delivering holistic and patient-centred care. I started at Stepping Hill Hospital as staff nurse on a female surgical ward in 1996, to gain a more rounded and acute experience. I developed a passion for surgical nursing and worked on both emergency surgical and short stay surgical wards.

‘In 2010, I joined the night team as a junior sister working closely with bed managers and patient flow teams, eventually becoming a senior night sister, gaining more responsibility and acting as site manager overnight. I returned back to day working in 2017 when I started as a ward sister at Shire Hill Hospital in Glossop.

‘I have cared for palliative patients and people at the end of their lives throughout my career. During the Covid-19 pandemic, my passion for end of life care grew; particularly the issues surrounding supporting patients who wish to die at home. For this reason, when I saw the job advertised I saw the opportunity to contribute to and make a difference to this patient group.

‘Since I started work at the hospice it has been a very busy few months. I, alongside colleagues, have recruited three trained nurses and two healthcare assistants to join the roaming car service. We have purchased all clinical stock, IT equipment and uniforms and I am currently working to put together policies and standard operating procedures relating to the brand-new service, and planning inductions and training for my new colleagues when they start in June 2023.

‘I am grateful to have done a lot of shadowing of external, partner colleagues including DHU Healthcare palliative care car, Treetops Hospice in Risley, near Derby; and our local community nursing teams. This experience has given me a really strong understanding of what they do and why; gaining advice and learning best practice to ensure our new service is the best that it possibly can be.

‘Throughout this year, I am really looking forward to my team starting and for induction weeks so that they’ll be able to meet colleagues across the hospice. Also, in the future, I am incredibly excited for the launch of the brand-new service and how it will improve patient outcomes.’

Stay up to date on our website and social media for information in the future about the launch of the Hospice at Home Roaming Car Service.

Find out more about the Hospice at Home service.

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Meet the team – Rachael Gee, fundraising and events coordinator

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Rachael Gee started working at Blythe House and Helen’s Trust as our fundraising and events coordinator in January 2022, after studying hospitality, conferencing and events management at A Level in Buxton, and then at university in Sheffield.

It is Rachael’s role to organise and coordinate our fundraising events to help raise the vital income needed to provide free hospice care and services to local people. It costs £2million every year to keep our services running and the hospice receives less than 20% of its income from the government; 80% must be raised through fundraising, and our local shops.

Rachael, who lives in Bamford, says: ‘I love the diverseness of my role; every day is completely different – one day I can be speaking to businesses about sponsoring a tee at our fundraising golf day, and then the next I will be working with our marketing team putting together a video for TikTok on how to make a Christmas wreath!

‘I am so grateful for the support from our local community, including individuals and businesses. Thanks to their remarkable generosity, the care and support that we provide remains completely free of charge to local patients and their families.

‘My proudest achievement since starting at the hospice has to be organising our Chatsworth 10k. It is our huge, flagship event and every year, over 1,000 runners take part in the beautiful grounds of Chatsworth. It was amazing to see the fundraising team and colleagues from across the hospice come together to support the event. A huge amount of work went into it; in the lead up and of course on the day. It was very emotional but such a good feeling having the support from colleagues, volunteers, friends and family there.

‘Our fundraising event portfolio has grown so much for 2023 and I am really looking forward to making them bigger and better as the years go on. We have an action-packed programme including golf days, a fire walk, abseil, the UK’s highest skydive, and the return of our super popular Chatsworth 10k and Jingle Bell Jog running events. There is something for everyone who would like to get involved in supporting their local charity!

‘I also help to mentor and support all our amazing fundraisers who are taking on challenges to raise funds for the hospice. So, if you’re thinking of taking on a marathon or another running event or challenge, I would love to hear from you.

‘If you have any queries, or you’d like to get involved in supporting your local hospice, please don’t hesitate to contact me.

‘Outside of work, I love to spend time with my two little boys and on my parents’ farm in Edale. I also enjoy walking and keeping fit.’

Find out more about this year’s fundraising events for the hospice.

Contact Rachael on:

 

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Meet the team – Julie Forrest, Volunteer Manager

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Julie Forrest started working at Blythe House Hospicecare as a fundraiser in 2017, and since then has established the hospice’s award-winning Community Volunteer programme; coordinating kind-hearted volunteers to provide support and carer respite to patients and families across the High Peak and beyond.

Julie, who originally hails from Aberdeen, has lived in Chapel-en-le-Frith for 15 years with her family. Here, she explains more about her background, and her current role here at Blythe House and Helen’s Trust:

‘I worked in sales and marketing for 10 years, and then as a childminder locally for nine years before working at Blythe House. I loved both roles, and childminding meant I was able to meet new people when we moved here, whilst spending time with my own children when they were little. My roles here at Blythe House and Helen’s Trust have allowed me to mix the caring aspect from my childminding days with my business experience as well.

‘I knew friends and local families who had benefitted from the hospice’s services, so when a friend spotted the fundraising role, I was really keen to get involved. My dad died of bowel cancer in 2013 and it really made me appreciate the need for good quality end of life care and support, fuelling my passion to help others in a similar situation.

‘Here at the hospice, I absolutely love working with people and I have met some of the most wonderful people in my role! The staff, volunteers, patients and carers all make my job worthwhile and a pleasure to do. To reach out and offer support to patients, carers and families when they need it most is such a privilege. We have an incredible team of volunteers who constantly surprise us with the talents and skills they have to support our services, and also to generate much-needed income. We simply wouldn’t be where we are without our team of volunteers and it is an honour to support and manage the team.

‘There are so many favourite moments that I’ve had during my time here. One of the biggest achievements and proudest moments would be mobilising our team of volunteers to support the community during the Covid-19 pandemic throughout 2020 and 2021. It was a frightening time for many, and to be able to turn that in to a positive experience for those who were shielding, anxious, lonely or vulnerable (regardless of whether they met our usual hospice patient criteria at that time), and for volunteers who wanted to help; felt really important. We continue to support our patients, carers and families at home, and with services at the Community Hub – I feel very lucky to be part of that.

‘The volunteer team (Lisa Youd, Mandy Baldwin, and myself), are always striving to do the best we possibly can for volunteer experience and patient services. As part of this, we will work closely with our team of nearly 300 volunteers to make sure they get the most out of their roles, and also tap in to their unique skills and experiences. We want this to be a rewarding role for everyone involved as every bit of support links together to complete the jigsaw.

‘We will continue to support all of our income generating staff and volunteers in their roles enabling us to bring in the necessary funds to enhance and develop patient services. We also work closely with the clinical team to see how we can provide the best possible services both here at the Community Hub, and across our local communities, whilst giving the best possible care. I was very inspired after visiting some other hospices earlier this year, and as such we hope to introduce some new groups and activities in the next few months… watch this space!

‘On a personal note, I absolutely loved (although I was terrified) doing the fundraising abseil some years ago, running the Chatsworth 10k, and setting my own personal running challenges in 2021 to raise money for the hospice. Outside of work, I love spending time with my family, and travelling when we can. I also love walking, and running in and around the beautiful area we live in – if you see me, please do give me a wave!’

Find out more about volunteering opportunities at Blythe House and Helen’s Trust.

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Sue’s story

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Sue and her family have a long and reciprocal relationship with Blythe House and Helen’s Trust; both from accessing care here, and supporting the hospice’s provision via their own charitable trust.

Sue set up the Stuart Fraser-Thomson Foundation in memory of her husband in 2011, after he died at home following his diagnosis with a terminal brain tumour. Stuart accessed care and support at Blythe House before his death.

The foundation raises funds to pay for mobility solutions including ramps and stair lifts for patients who wish to spend their final weeks of life in the comfort of their own home.

The physiotherapy and occupational therapy team here at Blythe House and Helen’s Trust work closely with the trust to access support aids for patients across the community.

Sue’s dad, Bill, was cared for at Sue’s home in Tunstead Milton by the Blythe House Hospice at Home service, before he sadly died in 2016. The team was there to support Sue’s mum, Eileen, in the final months of her life from October 2021 to May 2022.

Sue explained: ‘Mum was admitted to hospital in September 2021; doctors never really fully understood what was wrong with her. At first, they suspected it might be a tumour, but then suggested it could be engorged blood vessels in her abdomen. From then on, Mum was never really the same again. She wasn’t managing at home and she was no longer the feisty Mum that I knew.

‘Mum never wanted to accept outside help, but I called Dr Sarah Parnacott [consultant in palliative medicine at Chesterfield Royal Hospital, providing palliative care to patients across the High Peak and surrounding communities], who referred Mum to the Hospice at Home service.

‘Healthcare assistants would visit Mum at her home in Whaley Bridge every morning to support her with making breakfast, helping her around the home and just generally being good company for her. Mum became unsteady on her feet and she felt worried about taking showers, so she’d wait until the healthcare assistant arrived so they could help her if anything went wrong.

‘I spend a lot of time in France during the winter months and so it was great to know that Mum had regular contact and support from the Hospice at Home team. I came back from France in March 2022, and Mum was going into hospital in April to have a hernia repair operation. When she came out of hospital, she wasn’t steady at all on her feet and she had a fall; fracturing her ribs. After that, she came to live at my house, and she started to have Hospice at Home support through the nights too.

‘It was such a feeling of reassurance to know the healthcare assistants were there. Being able to get a good night’s sleep is a huge help. Mum was very comfortable with the team too, which put me at ease. I don’t think you realise you’re exhausted until you go to bed and you can just fully relax and sleep. It is hard to even describe.

‘When you’re caring for a loved one with a terminal illness, it’s just one thing after another, and it’s hard to put into words. You manage because you have to. Your sleep is so broken; you can become so low. It is a huge benefit to just get some sleep, and the Hospice at Home team enabled that to happen. The service supported both of my parents to die in the comfort of familiar surroundings, with their loved ones beside them.’

 

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Take on the challenge – Alice’s story

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Alice Bradbury, who was born in Litton, now lives in Chesterfield with her husband Michael and two boys, Freddie aged 6, and Charlie aged 2. Alice is taking on the Manchester Marathon on 16th April to raise money for Blythe House Hospicecare and Helen’s Trust.

Alice says: ‘I never thought I had a hobby but I guess running is it now… which is ironic because I always hated PE at school! If I ever saw someone running early morning, in the rain, cold, or just running in general I thought they were crackers – but now I get it!

‘Blythe House Hospicecare and Helen’s Trust has become a charity very close to my heart due to my one-in-a-million friend, Lynne. The hospice helped Lynne throughout her cancer battle. She had various complementary therapy treatments to help her with the pain and discomfort caused by her illness, and her husband, Chris, was able to access counselling to help him be in the best place to support her. The hospice generally supported her and her family when they needed it most.

‘Lynne had many talents; each one she was amazing at! She put these talents to good use to help fundraise for Blythe House Hospicecare and Helen’s Trust such as: selling her handmade face masks during the pandemic, baking her amazing cakes and numerous Jingle Bell Jogs! I don’t have many talents hence why I have to do crazy things, such as skydiving and marathons to raise money for this amazing cause!

‘The drive inside me to fundraise is my way of coping with the loss of lovely Lynne. She was my wise words when I needed them, always had the answer, and was always there, always full of positivity and sunshine, always brave, and always proud of her boys!

‘We have the love of two sons in common and she always just got it. She was a rare find – someone so genuine and so kind with nothing but support and love for people. She inspired me to be better and I want to continue to support the hospice, which is just such a fantastic place, and which Lynne appreciated so much!’

In 2022 Alice took the plunge of a 15,000m high skydive with Lynne’s eldest son, Ollie.

Alice explains: ‘We were supported from the ground by Chris; Lynne’s youngest son, Alex, and her lovely sister, brother-in-law, and brother. Something like this is completely out of my comfort zone, so it was a huge challenge for me. I hate rides, hate heights, and don’t really like airplanes!

‘However, it was incredible and I would do it all over again in a heartbeat! I’m not sure I would have got on the plane without Ollie by my side and the fact it was all for Lynne. The money that we raised for Blythe House Hospicecare and Helen’s Trust makes it all worth it!’

Alice and Ollie raised an incredible £2,130 for the hospice, and this money has already provided vital, high-quality care for local people affected by life-limiting illness in the High Peak and North Derbyshire.

Alice says: ‘There’s not much that can beat a skydive I don’t think… so, I thought I needed to work a bit harder this time, and truly challenge myself, hence the marathon idea!

‘Squeezing in the miles with two young children, work and general life is a task in itself and couldn’t be done without the support of Michael, my mum and dad enabling me to plod around Chesterfield for hours! I just want to raise as much money as I possibly can for Blythe House Hospicecare and Helen’s Trust, and I encourage everyone who can to on their own fundraising challenge for this fantastic local charity.’

Can you take on the challenge and run a Marathon in aid of Blythe House Hospicecare and Helen’s Trust

Click here for more information on how to fundraise. 

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Amelia and Raegan’s story

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Amelia Star Furness, from Chapel-en-le-Frith, features alongside Blythe Bear on our posters to help promote #GoBlue, our fundraising campaign to get people involved in raising vital funds for hospice services by ‘going blue’ from the 20th to 26th March.

Amelia was just four-years-old when her best friend, Kaiden tragically died of leukaemia and pneumonia, aged just seven. Within five weeks of Kaiden’s very sudden and devastating death, Amelia’s little sister, Kacie was born with severe hypoxic-ischaemic encephalopathy*.

Since then, Kacie (who is now six-years-old), has been diagnosed with cerebral palsy and epilepsy, and requires around-the-clock care.

These huge life changes were, quite understandably, a lot for Amelia to cope with. With support from Amelia’s primary school and the family’s social worker, Amelia, who is now ten-years-old, was referred to Blythe House for counselling and play therapy in summer 2022.

Raegan, Amelia’s mummy, explained: ‘Amelia had grown up with Kaiden since the day she was born. Kaiden’s mum, Mel and I have been best friends for 15 years. There was a three-year age gap between them but they spent every single day together – weekends, Christmases, Easter. Whatever Kaiden had, Amelia wanted, and vice versus. They loved each other very much. When Kaiden died, we were all absolutely devastated.

‘Just five weeks later, Kacie was born but she was very, very poorly. Amelia saw me at home on the sofa in labour and I had lost a lot of blood. The midwife came around and needed to cut Kacie out of me. Doctors said she wouldn’t make it through the night, but she is a little fighter and she’s here six years later.

‘Throughout the years of Kacie’s life, she’s had episodes where she is unresponsive and Amelia has had to call 999, relay back to me how to perform CPR and go to alert our neighbours for help. All of this total upheaval was a lot for Amelia to take in. She has attention deficit hyperactivity disorder (ADHD) and she struggles with emotional problems. All of a sudden, she would just burst into tears and I wasn’t able to help her.

‘We live locally so we have always known about Blythe House, and my Dad regularly donates to the hospice but I just didn’t realise that it provided counselling support to children Amelia’s age. The school and our social worker referred Amelia for support, and she had 12 sessions of counselling throughout 2022.

‘I have noticed a huge difference in Amelia’s behaviour since having the support from Blythe House. The counselling has helped Amelia to realise that sadly, forever is forever. That Kaiden isn’t going to come back and that Kacie is going to be poorly forever. Amelia has been able to talk openly about her feelings, and Ray [Leech, lead counsellor at Blythe House] has helped Amelia in a real way that I can’t. She provided Amelia with a safe space which was just for her.

‘By the third session, Amelia was jumping out of the car in the car park and running in to the hospice reception. June [Igo, hospice volunteer] was always on reception during Amelia’s sessions and she was so kind and friendly. Every week, we bought something from June on reception – a little handmade item or something that someone had knitted – and that was Amelia’s little thing that she liked to do. After her last ever session, June gave Amelia a star-shaped Christmas decoration and said: “That’s yours to keep from me.”

‘Amelia is lot calmer now; and is able to talk through things. Before, we weren’t able to discuss things without her getting upset, and she was so frightened of being with Kacie in case anything bad happened, but now she plays with her, and sings to Kacie for hours.

‘Amelia was nominated for a Mini Hero award in our community; we don’t know who made the nomination but we’re so grateful. She also attended the emergency services day at the Pavilion Gardens in Buxton in October and won a hamper. The police read out what an amazing girl she is for helping to care for Kacie.’

Amelia explained: ‘Ray with the purple hair helped me with emotional support. My favourite thing when I was with her was doing crafts and activities. One time, we played with clay and we also made a memory box for Kaiden which I drew a wonky giraffe on. Giraffes were Kaiden’s favourite animal. On my last session, Ray gave me a huge giraffe teddy which I’ve called Kaiden.’

*hypoxic-ischaemic encephalopathy may be diagnosed if your baby’s brain does not receive enough oxygen and/or blood flow around the time of birth.

Find out more and get involved in #GoBlue. 

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Meet the team – Lizzie Murray, care coordinator

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Lizzie Murray became the hospice’s care coordinator in August 2022, working closely with eight GP surgeries across the High Peak: Arden House and Sett Valley Medical Centre in New Mills; Buxton Medical Practice, Elmwood Medical Centre and Stewart Medical Centre in Buxton; Thornbrook Surgery in Chapel-en-le-Frith; Goyt Valley Medical Practice in Whaley Bridge; and Hartington Surgery.

Lizzie plays a very important role in providing a link between the hospice and surgeries to coordinate care for local patients who may need hospice care and support as close to, or in, the comfort of their own home.

Lizzie, who lives in Chapel-en-le-Frith, explains: ‘I am usually out and about, and have a base at each of the eight local surgeries. It’s important that I am out in the community so that staff and clinicians know who I am, and that they can come to me if they have any queries, ensuring a great working relationship and more joined-up care between the hospice and the practices.

‘We work within the Gold Standard Framework (or GSF as it’s known for short), which helps teams in all settings to provide more proactive, better supportive care, enabling patients to live as well as possible until they die. Patients who are approaching the last 12 months of life can be monitored more frequently and supported more appropriately as their conditions progress. Care may include managing pain and other symptoms for someone with a terminal diagnosis, (palliative care), supporting them to access benefits that they are entitled to, and understanding their wishes in the last days and hours of life, in relation to the treatment they want or don’t want.

‘Since starting my role, I have been shadowing a lot of our local community teams, and partner colleagues including palliative dementia nurses and dementia support workers, palliative care car rapid response nurses, Ashgate Hospice (ward and day centre), Dr Sarah Parnacott [consultant in palliative medicine] in one of her clinics at Blythe House Hospicecare and Helen’s Trust, social prescribers and district nursing teams. I have also shadowed staff at the hospice, and attended the groups which are held here. All of this will help me to understand what support there is for patients and families, and will help them access the right care and support that they are entitled to.

‘Everyone I have worked with so far is so passionate and dedicated to their jobs and they really care about the patients and the outcome; it was so lovely to see this in every area when I was having my training. This area of work isn’t for everyone; there can be some very sad and upsetting stories, but there are also some lovely, uplifting stories that make you realise how important your job is and that what you do is so valuable for patients and their families, particularly in the last weeks and days. I think that’s the nicest part; when you hear a good news story, or get a compliment, and you realise the work that you have contributed to has led to this. There is real job satisfaction and I’m looking forward to seeing where this job leads to and the help that can be given to patients, surgeries and professionals.

‘Prior to my role here at the hospice, I have worked within the NHS sector from the age of 18. I have worked in a hospital as a healthcare assistant and before that as a healthcare assistant in the community for a private company, providing care such as making meals, washing, dressing, and palliative care for patients who had been discharged from hospital, to die in the comfort of their own homes. I then went on to work in the radiology department as a booking clerk; booking X-rays, CT scans, ultrasounds, MRIs, fluoroscopy clinics, biopsy clinics. I then got a job as a medical secretary at a GP surgery and became a joint lead of a team of seven staff, which then led me to this job now.

‘I always loved working with palliative patients, but I decided I didn’t want to do my nurse training so went down the admin route instead. But I always missed working with patients and helping them, so when I saw the job role advertised, I just had to apply.’

Find out more about hospice care and services here at Blythe House and Helen’s Trust.

 

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Clare’s story

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It was a poignant day for Clare when she visited Blythe House on 9th November to share her story about the hospice care that her husband, Simon, received at the end of his life. Clare should’ve been celebrating Simon’s 57th birthday that day, but sadly Simon died in May 2022, just eleven months after his diagnosis with Stage IV metastatic lung cancer.

Clare, who lives in New Mills, explained: ‘The lead up to Simon’s diagnosis was confusing. He had no visible symptoms at all; no cough or anything to alert us that there was something wrong. We moved to the High Peak in April 2021. Towards the end of May, Si called me from the hallway: “Clare, help me, I can’t walk. I am having to think about how to walk.” Si was a very active man; he loved walking and nature, especially bird watching, and he worked as an IT project manager at the University of Manchester, following many years as a self-employed IT consultant.

‘Si kept having very intense headaches, and he would quite literally have to crawl up our stairs. I said to him: “You need to go and get checked out!” Si drove to Stepping Hill Hospital and within a few hours, a consultant there called me and said I needed to go to be with Si. After many scans and tests, Si was told he had six cancerous tumours in his brain, that had spread from his lungs. They also found it had spread to his liver and adrenal glands [located on top of both kidneys]. His prognosis was six months – potentially a few more.

‘Si was very accepting of the devastating news but I was absolutely heartbroken and I totally crumbled. It was such a shock. His brain tumours meant he could no longer drive. Si started to attend The Christie and Salford Royal hospitals to undergo treatment. We took it day by day. He underwent stereotactic radiosurgery, where he had to wear a special mask to keep his head still as precisely focused radiation zapped the cancer. The treatment was to slow down the spread of the cancer; at this point there was nothing they could do to actually get rid of it.

‘Si was still reasonably mobile; he had a stick to get about and he explained that he felt like he was constantly on a ship, feeling very dizzy. Si also started having seizures; it was absolutely terrifying. He would fit so badly; I’d have to get him onto the floor and hold his head to protect his airway. Si went back to hospital where they prescribed anti-seizure medication. I had pulled out onto the A6 in rush hour as we were driving home, we’d literally got to the Sainsbury’s in Hazel Grove, when Si had a seizure in the car and I have never been more scared in my life.

‘The brain tumours affected Si’s speech and memory. He was a very articulate man and found it really difficult to speak and form sentences at times. But, he stayed very positive. He would speak to his brothers and only give the positives, not the reality. Then his brothers would ring me and say: “What’s really happening?” Si underwent some chemotherapy at The Christie, but specialists would only allow four sessions at 65% intensity, because they were incredibly concerned about balancing Si’s quality of life, and his body was just too weak.

‘Dr Sarah Parnacott [consultant in palliative medicine at Ashgate Hospice and trustee at Blythe House and Helen’s Trust], became involved in Si’s care, alongside Liz and Lesley from Ashgate who were a specialist nurse and support worker respectively. They came and visited us at home, and they were just incredible. Dr Parnacott gave me her mobile number; she said: “Ring me for anything.” I felt so safe. The whole experience was really isolating for me. I was responsible for, and did everything for Si. I was advocating for him, sorting his medications, giving injections and doing observations at home; caring became my full-time job.

‘Miriam and Angela, occupational therapist and physiotherapist at Blythe House Hospicecare, came to visit us and they were just amazing; much to Simon’s horror that he now needed all these aids to get around the house. It was hard to admit for him that he was not as strong as he used to be. Miriam and Angela liaised with partner organisations to help us around the home, including getting a bannister fitted as our rented home didn’t have one; rises over the loo for Si to be able to get on and off the toilet; stools for the shower; rails around the house and outside on our drive. Later, they worked with the Fraser-Thomson Foundation in Disley to get a curved stairlift fitted.

‘Dr Parnacott was kind enough to help us get married at home in September 2021. After being together since 2017, we were due to have a big wedding day but Covid-19, and then Si’s prognosis, confirmed that this could not go ahead as planned. We were joined by my children and a registrar in our garden. It was a beautiful day, and we were due to have a small gathering of family and friends the next day to celebrate but unfortunately Si was just too weak and poorly.

‘Blythe House’s community volunteer programme also supported us. Tom, a community volunteer, came around to sit with Si to give me the opportunity to go out, run errands, go to the doctors, to get my hair cut, pick up medication or do some shopping. Tom and Si got on so well. Tom worked with Si to help re-build a bird table in our garden, and Si just absolutely loved his time with Tom.

‘Si and I also accessed support and services at the hospice building in Chapel-en-le-Frith. Si would enjoy having massages to help ease the pain of lymphoedema swelling in his legs. Not long after, the Hospice at Home service also got involved to provide care and support to Si at home. The healthcare assistants were angels, they really were. They were such a help. Even the smallest things like making a cup of tea, having a chat or doing the washing up. One day, when Si was resting, I walked into the kitchen and a healthcare assistant was stood at the sink. I said: “What are you doing? You can’t do that!” And she simply answered: “I can do what I want to help you!” I can’t explain the sense of relief; the feeling of having some normality during those times when someone was watching Si and I could have just a few hours to myself.

‘Si wanted to stay at home; he was so determined to die in his own bed, with his beloved family and cats beside him. In the last 24 hours of his life, Si became more and more tired, and slept more. At around 1am in the morning, I nodded off next to him on the bed, fully clothed, and when I woke up, he had passed away. I couldn’t believe it; I didn’t know what to do. A district nurse and a Hospice at Home healthcare assistant came around to certify Si’s death. I felt like I had lost my job; I had been so busy for 11 months; I just didn’t know what to do with myself.

‘We had previously talked about Si’s funeral and his wishes; he very much wanted to be involved in the planning process, choosing his music and even the cemetery where he’d like to be buried. Si also told me his wishes for his clothes and belongings; giving items to his family and donating stuff to Blythe House’s charity shop. It was great for me, as he’d decided everything and it meant I didn’t have any difficult decisions to make. Going through this process with Si made me realise how important it is; and I need to do the same with my children to give them some support and relief so they don’t have to think about that when anything happens to me.

‘Si had an ongoing joke with our beloved cat, Rufus, who he had rescued many years ago. Rufus was 21-years-old and Si would joke and say: “Who’s going to go first? Me or the cat?” Turns out that Rufus beat Si to it; Rufus died in February, with Si passing away on 17th May. Rufus’ ashes are with Si in his coffin; they have been reunited.

‘After Si’s death, I continue to receive support from Blythe House. I visited the hospice to meet the Community Hub team; I needed to be here and I just feel so safe. I also have had counselling which is my safe space to just talk. I have attended the bereavement support group, ran by the hospice in partnership with High Peak CVS. I needed to ask the question: “Is this feeling normal?” I had been by Si’s side 24/7 for the last year, including before that, throughout the Covid-19 lockdowns. I missed him and his presence terribly.

‘The whole process of Si’s illness was a real eye opener. I had heard the word “carer” before, especially in my job working in corporate services for the NHS for the past 20 years. But. I never realised the magnitude of the role. I have a huge and incredible respect for anyone who is a carer for a loved one. I can’t believe I did it; I’m very proud of myself. But that’s what you do when you love someone.’

Learn more about how our range of hospice services could support your loved one.

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