A life-saving defibrillator is now installed at Blythe House Hospicecare, thanks to funding from a local charity.

Chapel-en-le-Frith United Charities provided a grant for the equipment, after Kath Sizeland, High Peak borough councillor for Chapel West ward, suggested installing it at the hospice to ensure accessibility for residents in the area, and to complement other defibrillators in the town centre.

The kit has been erected on an external wall of the hospice building on Eccles Fold, so that it is easily accessible – directly under the main sign for the building.

Alistair and Kath

Alistair Rogerson, business development manager at Blythe House, said: ‘We’re so grateful to Chapel-en-le-Frith United Charities for funding the installation of the defibrillator.

‘The hospice is located within a rural community, and an area of Chapel-en-le-Frith where many older or more vulnerable residents live. I hope that this equipment will bring peace of mind to the community – although we hope it never does need to be used, it’s great to know that it’s there and will be able to provide life-saving treatment to a patient whilst an ambulance is en route.’

Kath Sizeland commented: ‘I am really pleased to see the defibrillator installed at the hospice building. It is a crucial piece of emergency medical equipment, and it was really important that another defibrillator was installed at the “top end” of the town, to supplement other equipment in lower Chapel-en-le-Frith.’

In the case of nearby cardiac arrest emergency, the defibrillator (registered with the ambulance service) will enable a local resident to call the emergency services who will advise them of the access codes to use it.

Statistically, for every minute someone is in cardiac arrest without cardiopulmonary resuscitation (CPR) and access to a defibrillator, chances of survival drop by up to 10% (British Heart Foundation).

People across the High Peak and Derbyshire Dales who are caring for a loved one with a life-limiting illness, are being urged to seek support.

We provide support and advice to carers who’re looking after a relative or friend who may have an illness such as cancer, chronic obstructive pulmonary disease, heart failure, Parkinson’s or motor neurone disease.

The hospice is commemorating Carers’ Week (7-13 June), an annual campaign to ‘raise awareness of caring, highlight the challenges unpaid carers face and recognise the contribution they make.’

We host a monthly support group for carers, providing a safe and relaxed environment for local carers to share problems, concerns or experiences with the knowledgeable team and with others in a similar situation. Staff also provide one-to-one care and advice for carers including complementary and talking therapies.

Louise Furmston, community engagement lead nurse, explained: ‘Many family members do not see themselves as “carers” when they are living with someone who has a life-limiting illness. Their focus is supporting the person who is ill and they often do not acknowledge the impact upon themselves. They become absorbed in the role of caring, putting the needs of the person they are caring for above their own needs and well-being.

‘Blythe House Hospicecare is here to support “the whole family,” offering a listening ear and exploring “what matters to them,” providing support and advice in relation to their needs.’

Joy Stephenson’s husband, Chas started to attend Blythe House following his diagnosis with a rare form of blood cancer. Joy was offered carers support from the hospice, before Chas sadly died in January 2021. He received care from the Hospice at Home service, and died in the comfort of his own home.

Joy, from Hayfield, said: ‘The hospital consultant made the referral to Blythe House; and then followed almost two years of what I can only describe as an amazing and wonderful partnership between us and the marvellous staff at the hospice.

‘One really good thing was the opportunity for him to spend some quality time in the company of other men and the chance for a good natter. Not only was Chas pampered, but my needs were also being cared for – a chance to talk about my worries and concerns, and the offer of complementary therapy, so I was able to have some relaxing pampering too. We very quickly came to realise that the whole ethos was to meet the needs of us both, and to anticipate when that help needed to be stepped up.

‘I think the most difficult thing was when to accept the offer for that support to come directly into the home. Inviting strangers into your home to take over much of the caring role was hard. On the one hand, I felt I was abdicating responsibility and I wasn’t sure what to expect. On the other hand, I was becoming exhausted and realised that I was struggling to cope. I shouldn’t have worried; the carers were so experienced and sensitive to our needs and they became welcome friends and always seemed to know exactly what was needed. More importantly, I came to understand and welcome their input, especially when they always seemed to know the right time to step up the amount of care we needed; I never needed to ask.

‘They delivered all this care with compassion, sheer hard work, friendship, love and, so often, much-needed good humour. Above all, they allowed Chas to maintain as much dignity as possible and to die at home surrounded by love with me and my daughter beside him.’

Read Joy’s story.

Find out more about how Blythe House and Helen’s Trust could support you and your family by calling: 01298 875 080, or visit ‘our services.’

Sandra Mather first encountered Blythe House back in 2006 when she was a student nurse at the University of Derby, visiting the hospice to learn more about patient therapies and out-patient clinics, including palliative medicine and lymphoedema.

Sandra

Sandra, who is now a district nurse with the Bakewell and Baslow Team for Derbyshire Community Health Services NHS Foundation Trust, regularly refers her own patients to Blythe House’s 24/7 Hospice at Home service, for palliative and end of life care in their own homes.

The Youlgrave resident has a former Blythe House employee to thank in part for her nursing career: Ruth Brown, who set up the Hospice at Home service back in 2016 and only recently retired in March 2021. Ruth inspired Sandra to go to university as a mature student and study to become a nurse.

Sandra said: ‘I have known Ruth for a very long time and it was her who inspired me to undertake my nurse training when I was a patient at Youlgrave and she was a mature nursing student at the practice. Ruth spoke so passionately about her role; it was one of the reasons I decided to study nursing myself.

‘I have always kept in touch with Blythe House throughout my career and work very closely with the Hospice and Helen’s Trust in my role as district nurse, alongside Dr Louise Jordan who’s a GP at Baslow Health Centre and a founding trustee of Helen’s Trust.’

The Hospice at Home service is now supporting Sandra’s own family, after helping her step mother, Lillian to die peacefully at home in February, and providing ongoing care to Sandra’s dad, John who has end stage heart failure.

John and Lillian

Sandra explains: ‘Lillian’s illness progressed very quickly – she became symptomatic in October 2020, and was diagnosed with terminal cancer: an unknown primary source and liver metastases. Lillian was a healthcare assistant during her career, so she knew what was coming; things really started to escalate from Christmas and she was in and out of hospital.

‘Prior to her illness, Lillian was Dad’s full-time support and they had been married for 23 years. As well as heart failure, Dad has also been diagnosed with kidney failure and he too, has had cancer in the past. Dad was very independent and could do a lot of things for himself, but Lillian would help him to dress and get him ready for bed. Sometimes during the night, Dad would wake up disorientated and Lillian was always there to say “go back to sleep, John.”

‘My husband and I moved in to support them both when Lillian became too unwell. Her illness was a huge shock to everyone as she was fiercely independent. During the last week of her life, I called upon Blythe House and Helen’s Trust to see if they could step in to provide night-time sits. The sits supported my husband and I to go back home and have a change of scenery, get a good nights’ rest and to enable me to cope with the day-time care for them both.

‘Lillian did have, what I would call, a “perfect death.” I am a big believer in having a good death, in my role as a district nurse. She looked beautiful; she wasn’t agitated or in pain. It was the best it could have been. She died peacefully at home on the 6th February 2021.

‘After Lillian died, Blythe House and Helen’s Trust started to provide respite night-time care for Dad. Dad is “fast tracked” [some people who are close to the end of their lives may be referred for Continuing Healthcare on the ‘fast track’. This is a streamlined process for people whose health is rapidly deteriorating and who require end of life care] and we were able to access support from local care agencies. However, I waited until Blythe House and Helen’s Trust had the availability and capacity to provide care for Dad because I wanted their continuity and compassion.

‘Healthcare assistants from the hospice support my family with four night-sits per week; they’re a God send to me personally, as they enable me to continue working as a district nurse. My sister, who is an infection control nurse at the Royal Hallamshire Hospital in Sheffield, and my daughter who’s training to be a Nursing Associate at Derby University, also help to look after dad; we are a family of nurses.

‘The night-time sits provided by the hospice help me to have much-needed time out, go home, have a change of scenery and a full night’s sleep. The hospice team is so flexible; they always try to accommodate my working pattern and space out the sits depending on my shifts, so that I am not exhausted. Furthermore, the continuity of care for Dad is just fantastic; all the healthcare assistants have developed a therapeutic relationship with Dad and he enjoys the rapport and their company. They’ve all got their own sense of humour and ways of working, and nothing is too much trouble for the team; they all go that extra mile and always go beyond what is expected.

‘In my professional role as a district nurse, I know that I can call upon the Hospice at Home service for support too. One day, I rang the team at around four o’clock in the afternoon, about one of my patients who was very near the end of their life. I said “I don’t suppose there’s any chance you could pull something out of the bag for a night-sit tonight?” I left it with them, and they arranged it all. They do amazing things like that. That patient died that night – but knowing their family was supported, to take the pressure off and to make losing someone the best it can be – that’s all you can ever wish for.

‘At home, we also have support from a hospice Community Volunteer called Charlie. He visits once a week to chat to Dad or read to him. He’s really quite amazing. The afternoon visits give me chance to go out and do shopping, walk Dad’s dog, Patch, or catch up with jobs at home; knowing Dad’s in very safe hands. Life would be hectic without Blythe House and Helen’s Trust, and I wouldn’t be able to manage. I’d be exhausted both physically and emotionally.

‘As a district nurse, I continually encounter end of life patients in a professional environment, but now I am living it myself and it is heart breaking. Lillian has left a big void since she died, but we’re carrying on, and the hospice is enabling us to do that.

‘Both Dad and I donate monthly to the Hospice to enable others to receive excellence in healthcare and comfort in the own homes.’

Find out more about our Hospice at Home service and how it could support your family.

We are thanking over 250 local people who give their time for free to support local hospice care, as part of a nationwide celebration of volunteers.

The annual Volunteers’ Week (1-7 June) is a chance for charities like Blythe House Hospicecare and Helen’s Trust to say thank you for the contribution millions of people make across the UK through volunteering.

The hospice’s team of volunteers collectively donate around 590 hours of their time every week, in three key areas: patient services, retail and fundraising.

Blythe House and Helen’s Trust provide palliative and end of life care to patients across the High Peak, Derbyshire Dales and North East Derbyshire.

Wendy Brown, HR advisor, said: ‘My main contact with volunteers during the past year has been due to the rigid Covid regime that we have in place here at Blythe House. From those patient-facing volunteers who test three times per week, to those keying the testing data whilst managing reception, everyone has been amazing. Such enthusiasm, such dedication and passion for their volunteer role. I thank you sincerely for the way in which you fly the Blythe House flag, helping so many who need our support and services within the local community and beyond.’

Anne Hatton, manager at the hospice’s Whaley Bridge shop, commented: ‘Thank you to all our shop volunteers for your precious time, knowledge and expertise that make the shops such a success. You all help make such a difference to people’s lives.’

Becca Gregory, fundraising and events coordinator, added: ‘A HUGE thank you to all of our volunteers; without you the services provided by Blythe House and Helen’s Trust would not be possible. Our fundraising events are a vital source of income to the charity, but they rely heavily on volunteers dedicating their time at every stage to ensure they can go ahead safely and with the highest level of enjoyment for participants. Thank you to everyone that volunteers their time to keep all aspects of the hospice running smoothly.’

As part of the weeklong celebrations, the charity is inviting prospective volunteers to get in touch and find out more about donating their time to support local hospice care.

Vicci Wild, Community Volunteer programme manager, said: ‘We would love to hear from people who might like to give some time by volunteering in one of our hospice shops located in Bakewell, Buxton, Chapel-en-le-Frith, New Mills and Whaley Bridge.

‘We are also keen to hear from complementary therapists who would like a rewarding volunteer role supporting those in our community affected by life-limiting illness. Offering aromatherapy, reflexology and other complementary therapies to local patients and carers, can positively impact their physical and emotional health.’

To find out more about volunteering opportunities at the hospice:

Our annual review for 2020/21 is out now! Featuring information and patient stories about hospice services throughout the Covid-19 pandemic and lockdowns, it highlights the incredible work of our staff and volunteer teams.

The document is dedicated with grateful thanks to everyone who has supported Blythe House and Helen’s Trust during the past year, including local people who have donated so many items, including personal protective equipment to keep our teams safe during Covid-19, our volunteers, patients, families, fundraisers and partner organisations. We are so proud to work with you, and thank you sincerely for your amazing support!

Do you know a local business or organisation that might like to display our annual reviews in their reception/guest areas/waiting rooms? We’d be delighted to give copies out to help spread the word about our services. Please email to arrange: communications@blythehouse.co.uk.

Printed copies of the annual report are available to pick up at the hospice building on Eccles Fold, Chapel-en-le-Frith, and will be soon at our five shops in Bakewell, Buxton, Chapel, New Mills and Whaley Bridge.

Read it online now.

Miriam Haddock (occupational therapist) and Angela Salisbury (physiotherapist) joined Blythe House earlier this year, in brand new roles in the new Community Hub. We’re delighted to have them on board and know they’ll make a huge difference to local patient care. Here they explain more about their roles…

Miriam – What does your role as occcupational therapist here at Blythe House entail?

As an occupational therapist (OT) at Blythe House I am part of Rehab @ The Hub and the wider multidisciplinary team at the Community Hub, also accessing services from Hospice at Home.

OT and palliative rehabilitation look different to every person, but it is based on a patient’s need to find purpose and meaning to further their quality of life. The OT is ideally placed to work with patients helping to ensure their strengths and skills are working in a suitable environment allowing them to do the things that matter to them.

Occupational Therapists in palliative rehabilitation can offer:

  • Activity analysis and advice/retraining on continuing activities and interests that are a priority to them (such as getting in and out of bed, washing and dressing, using the bath/shower/toilet, managing the stairs, preparing drinks/snacks/meals, playing with children on the floor, participation in sports)
  • Working and driving advice
  • Assessment and provision of specialist equipment enabling people to remain as safe as possible and independent
  • Assessment of muscle tone with regard to splinting for hygiene and comfort
  • Upper Limb /Hand Rehabilitation for Chemotherapy Induced Peripheral Neuropathy (CIPN)
  • Lifestyle management advice to cope with fatigue or altered level of independence
  • Assessment of moving and handling and advice regarding all transfer methods throughout stages of illness
  • Falls assessment
  • Sleep management
  • Stress/anxiety management advice and relaxation techniques
  • Cognitive assessment
  • Supporting and educating carers/family regarding patient’s changing level of functional and/or cognitive ability
  • Advice regarding coping strategies for dealing with cognitive impairments
  • Facilitating psychological adjustment to loss of function/roles in life
  • Assistance to participate in leisure activities or develop new leisure interests

The list is not exhaustive. Assessment and intervention can be carried out on a 1:1 clinic basis or as part of a symptom management or educational group.

Tell us a little bit about your OT career to date

I have moved around a lot in my 14-year career as an OT, from the Midlands to the Highlands. This is because my husband is in the Royal Air Force and so we have moved about with his career. This has allowed me to take examples of good practice from around the country and apply it to my own clinical work. I have worked for a number of acute Hospital Trusts and as part of many community teams, both as an active team member and a Team Lead. My clinical experience has been varied; ranging from neurology to surgery and oncology and general rehabilitation.

Angela – What does your role as physiotherapist here at Blythe House entail?

We’ve started here during a really exciting time of development at the Hospice and I think this will allow for flexibility in the therapy services that we build. We want to reach out in to the community and provide a service that responds to the need of our patient group. This is likely to mean our service evolves and changes as time goes by.

Physio’s can work with people with a vast range of diagnoses whether they be respiratory, neurological, lymphatic, orthopaedic or musculoskeletal and with an array of symptoms for example weakness, stiffness, instability, pain, fatigue, breathlessness, falls etc. In addition to this patients can often become debilitated and deconditioned not only due to their illness but also the side effects of treatment they are receiving.

On referral, I will carry out a full and holistic assessment and will work alongside the patient and their families to set a treatment plan towards realistic and achievable goals.

I can also offer a range of treatment delivery options including 1:1 sessions, group therapy, treatments at Blythe house or sessions within the patients home.

Tell us a little bit about your physio career to date

I qualified as a Physiotherapist from Manchester University in 2004. I worked for over 16 years at Salford Royal Hospital covering many clinical areas and departments. I specialised in Neurological Physiotherapy working with patients with a multitude of pathologies and diagnoses such as brain tumours, acquired brain injuries, MND, Parkinson’s, spinal cord injuries and with patients following Neurosurgery. Since 2010 I have worked primarily within the Stroke Service.

Both – So far, what have you found that you enjoy most about working here?

We have received a very warm welcome from everyone we have encountered and worked with so far. We have been privileged to have had a month in which research existing services, networking to understand how we can best work together to support the needs of the local community. Our new colleagues at Blythe House and Helen’s Trust are excited to begin effectively working together. We hope to support their existing services while continually striving to develop, so we are very enthusiastic to begin offering OT/Physio clinics, symptom management groups and education sessions as part of the Rehab @ The Hub.

Both – What are you most looking forward to in the coming weeks as we begin to welcome patients and visitors back to the hospice safely?

We are really looking forward to seeing and being involved in Rehab @ The Hub service, constantly striving to improve and expand the services that we can offer, whilst being able to demonstrate our therapy outcomes. We hope to reach out to the whole community and are looking forward to meeting our new patients and their families.

Joy Stephenson’s husband, Chas started to attend Blythe House following his diagnosis with a rare form of blood cancer. Joy was also offered carers support from the hospice, before Chas sadly died in January 2021 after receiving Hospice at Home care.

Joy, from Hayfield, explains: ‘Chas and I met as students and our first date was when he asked me to go for a walk after dinner while we were on a geology field trip in Tenby – the rest is history as they say! We were 20, and married four years later in Aylesbury where we were both working and went on to have three lovely children. We later moved, first to Warwickshire and eventually in 1972, to High Peak, where we brought up our children and have lived here ever since. We celebrated our diamond wedding in April last year but sadly, Covid and Chas’ health problems, meant it was not the big family affair we would have hoped for. He was part of my life for more than 65 years – we couldn’t have dreamt all those years ago that we would be so fortunate.

‘Chas had a variety of apparently unrelated health problems over a period of several years before a routine blood test, ordered by his dermatologist, led to a diagnosis of myelodysplasia [a rare form of blood cancer] early in 2015, followed about three years later by a diagnosis of vascular dementia. The dementia diagnosis was surprising because he didn’t fit the normal profile of a sufferer – he didn’t smoke and was extremely fit and active – a long distance walker and fell runner. He was never happier than when he was out roaming over Kinder Scout and the wider Peak District. He was still walking long distances most days until about two years before he died – not being able to be out on the hills was so frustrating for him but he continued to walk locally most days for as long as he could.

‘Following the blood cancer diagnosis, Chas became increasingly transfusion dependent and any knocks which caused bleeding meant frequent trips to A&E for platelet transfusions to stop the bleeding. Eventually it became clear that he was not benefitting as much as he might from his blood transfusions but he needed to make the decision to stop for himself. I found it difficult to broach the question of when is enough, enough and he always sidestepped any attempts to discuss end of life care with me.

‘Two people came to the rescue: firstly the consultant at the hospital who was able to ask, and get a thoughtful response. He arranged for Chas to sign a ‘do not resuscitate’ DNR form, and then the wonderful Dr Sarah Parnacott who was able to have a good conversation with us and fill in a ReSPECT [Recommended Summary Plan for Emergency Care and Treatment] with him, with his end of life wishes clearly stated. Essentially, this meant being cared for, and dying, at home.

‘The hospital consultant made the referral to Blythe House; and then followed almost two years of what I can only describe as an amazing and wonderful partnership between us and the marvellous staff at the hospice. I won’t pretend that it was always easy – initially we weren’t sure what to expect and it isn’t easy handing over so much of your life to other people, and to allow them to take such an intimate part in your lives. However, we were immediately given a warm welcome. At the beginning, Chas was quite resistant to going: “I don’t see why I have to go there?” But, he always enjoyed his time there and I could have a few hours to myself knowing than he was such good hands.

‘One really good thing was the opportunity for him to spend some quality time in the company of other men and the chance for a good natter. Not only was Chas pampered, but my needs were also being cared for – a chance to talk about my worries and concerns, and the offer of complementary therapy, so I was able to have some relaxing pampering too. We very quickly came to realise that the whole ethos was to meet the needs of us both, and to anticipate when that help needed to be stepped up.

‘I think the most difficult thing was when to accept the offer for that support to come directly into the home. Inviting strangers into your home to take over much of the caring role was hard. On the one hand, I felt I was abdicating responsibility and I wasn’t sure what to expect. On the other hand, I was becoming exhausted and realised that I was struggling to cope. I shouldn’t have worried; the carers were so experienced and sensitive to our needs and they became welcome friends and always seemed to know exactly what was needed. More importantly, I came to understand and welcome their input, especially when they always seemed to know the right time to step up the amount of care we needed; I never needed to ask. Night care became the next issue, our nights were becoming increasingly disturbed and it was difficult to see how it would work, but of course, I shouldn’t have worried. At first, it was one or two nights a week but this gradually needed to be increased as Chas’ condition worsened and then we came to rely on it.

‘So what do the Hospice at Home healthcare assistants do? The answer is everything and anything that is going to help all the family. At its most basic, helping with washing, showering and dressing, and then helping to get ready for bed. But it becomes much more than that; applying ointments and creams, changing beds, dealing with washing, preparing food and then feeding if necessary.

‘Their advice becomes invaluable – especially on helping to adjust to a constantly changing situation and above all making sure that I was ok. This became an issue for us as I started to develop health problems of my own and they were there for me too. They delivered all this care with compassion, sheer hard work, friendship, love and, so often, much-needed good humour. Above all, they allowed Chas to maintain as much dignity as possible and to die at home surrounded by love with me and my daughter beside him.

‘Does this do them justice? Probably not! I can’t find the words to express what they meant to us. The family and I will never forget them, and will be forever in their debt. Thank you.’

Find out more about our services and how they could support your family.

Remember someone special as part of our Sunflower Memories month. 

Throughout June, you can dedicate a flower in memory of someone special, and make a donation to support local hospice care and services.

For a suggested minimum donation of £10, a sunflower in the virtual hospice garden will be dedicated to your loved one, and you’ll receive your very own sunflower plaque bearing your relative or friend’s name, to plant in your garden at home.

All the money raised during the month-long commemorations will go towards providing free palliative and end of life care to local patients.

Dedicate a sunflower in memory of someone you love.

Steven (left) with grandma Heather, brother, Shaun and mum, Sue

This Sunflower Memories Month, Steven Searle from Buxton is remembering his beloved Grandma, Heather.

Blythe House’s Hospice at Home service provided care and support to Heather Buxton – who had kidney failure and cancer – earlier this year when she was discharged from hospital. Heather died in February, in the comfort of her own home in Chinley, with her family beside her.

Her grandson, Steven, explains: ‘Grandma had always been in good health. She was 81-years-old and except for a few issues and sometimes feeling unwell, she was generally fit and healthy. However, in November 2020, she collapsed in the bathroom at home and, my Grandad, Les called and asked me to help. Grandma was taken into hospital.

‘The next morning at about 5am, I received another call from my Grandad as the hospital had rung and said that sadly Grandma was dying. Thankfully, though, Grandma underwent a procedure to insert a tube into her side, to help support her kidney function. This was a success and Grandma’s recovery went well.

Steven’s grandparents Les and Heather with daughter, Sue

‘After spending nine weeks in hospital, Grandma was allowed home in early January and this is where the assistance from Blythe House started. Foday Kamara, the minister at my Grandparent’s church and a volunteer at a hospice, first suggested that Blythe House’s Hospice at Home service would be able to help.

‘Grandma had support from healthcare assistants (HCAs) during the morning and evening, helping with bathing and personal care, amongst other tasks. The healthcare assistants also provided overnight sits so that my Grandad and my Mum, who had moved into her parents’ home to help care for Grandma, could get a proper night’s sleep.

‘It wasn’t just the personal care that the HCAs were brilliant at. They provided so much advice and support around pain management and controls so that we could make sure Grandma was as comfortable as possible. It is a very intimidating thing having to look after someone who is so poorly, but they were on hand to answer questions and could point us in the direction of whom we would need to speak to about different aspects of Grandma’s care. The personal relationships that they struck up with not just Grandma, but the whole family, were equally brilliant.

‘The day before she died, Grandma was very distressed and screaming in pain. The HCA, Anna, stayed much longer after her shift ended, to help Grandma to feel safe and as comfortable as possible before we were able to arrange for some more medication.

‘Later that night, Hayley, another HCA who came for the night sit, made my Mum aware that sadly Grandma was dying. Mum was able to be there and hold her hand until the very end. Grandma died peacefully just after midnight on 19th February.

‘It was so important for my Grandma to be at home. After spending nine weeks in hospital, during the coronavirus pandemic, she was sometimes very emotional and distressed. It meant everything to be able to get Grandma home and to have the care in place from Blythe House, because that is where she wanted to be. It meant everything to me and my family to have her safe at home; nobody wants to think about their loved one dying in an isolated environment on their own.

‘As a family, without Blythe House, we wouldn’t have coped. We were a family in need, and although the whole situation was traumatic, to see Grandma so poorly, it was made one hundred times better by the Hospice at Home service and its amazing HCAs.

‘I am planting a sunflower this June in memory of my Grandma, and to support Blythe House to raise as much income as possible for this vital service.’

Dedicate a sunflower today to remember your loved one.

‘Arranging Mum’s funeral, I knew exactly what she wanted; I had no regrets that I’d done or chosen anything wrong, and I knew I’d done her justice.’

Dying Matters week aims to raise awareness of opening up the conversation between families and friends about death, dying and bereavement. One way to do this is to discuss your funeral plans so that your loved ones know what you’d like to happen, and can respect your wishes.

It was widely reported earlier this year that Prince Philip had planned his own funeral – including making his final journey in a Land Rover Defender, and personally choosing the military medals and decorations that he wanted to be displayed.

Dying Matters explained: ‘By taking the initiative and setting out what you want now, you can get on with living your life, knowing that when the time comes your loved ones will know what you wanted and be spared from having to make difficult decisions.’

Cathy Price’s mum, Janet sought advice and support from Blythe House after she was diagnosed with oesophageal cancer in September 2020. Nurses from the hospice called Janet weekly to chat about how she was doing. Janet also took part in the weekly online Community Hub support group meetings alongside other local people diagnosed with a life-limiting illness. Janet very sadly died in March 2021 after the cancer had spread to her lungs.

Cathy, who’s from Buxton, explained: ‘Mum started to feel differently around Christmastime 2019. She didn’t ever normally go to the doctors or seek advice, but she knew deep down something was wrong. Doctors initially thought it was reflux and put her on different medications that did not help. She was finally referred to the hospital for a gastroscopy – it was the day that the first national lockdown was officially announced in March 2020 – and unfortunately, because there was no mention in her medical notes of a lump in her throat, the procedure was cancelled.

‘Lockdown of course stalled everything and nothing happened for months. Mum finally got another appointment to see a doctor. At this point, she wasn’t eating properly and couldn’t swallow solids; she was living off yoghurts and ice cream. Mum and I called 111 and the advisor suggested that Mum went to hospital. It was here, finally, in September, that she was diagnosed with cancer of the throat.

‘Mum underwent radio and chemotherapy at The Christie, so there was a lot of toing and froing between home and hospital every day. She finished her treatment on the 15th December and was able to spend Christmas at home. Afterwards, she became really poorly again, and she was transferred to hospital.

‘Mum enjoyed hearing from staff at Blythe House every week; it gave her someone different to talk to about her prognosis, worries and concerns. Living on her own (though I was in her support bubble throughout the lockdowns), it was nice for Mum to be able to chat to someone different who could provide support and give advice. The Zoom meetings with other local patients definitely had a positive effect on her mood, and she’d relay stories from different participants.

‘When she found out that the cancer had spread to her lungs, there was an opportunity for her to have a tube inserted to help drain liquid. Unfortunately, her lungs were filling that quickly that doctors weren’t able to undertake the procedure the first time round. After this, Mum declined the second chance to try inserting the tube, and so a plan was put in place for end of life care.

‘Despite Covid-19, because Mum was so poorly, I was able to go and see her in hospital. I spent every day with her and we talked so much. One of the things we talked about was her funeral. She asked me to get everyone a drink on her, and she said she wanted everyone to wear bright colours and silly hats! She asked me “talk me through the day then, what’s going to happen?”

‘Mum was transferred to Ashgate Hospicecare in Chesterfield on 1st March 2021; she only spent six hours there before she sadly died.

‘Mum had already paid for her funeral so that wasn’t an issue but I had to think about how to arrange the proceedings. I knew it would be hard to get everyone a drink, because we weren’t allowed a wake or a celebration – only 30 people were allowed to attend her funeral! We did have a web cam set up so that other people could attend from afar – including my sister who lives in America, and my best friend in Australia.

‘One night whilst I was on FaceTime to my sister, we were chatting about arranging the funeral and fulfilling all of Mum’s wishes. We came up with the idea of giving out goodie bags. There and then, we ordered brightly coloured bags off the internet – Mum did not want anything dull! In them, we put a mini bottle of prosecco, some rosé lemonade or a coloured beer; a candle; a party blower and an animal hat; a butterfly decoration as Mum loved butterflies; and a gift tag. My children, Milly and Leo, and I, also made heart-shaped cheese and ham sandwiches, and we put a sausage roll in each bag. Arranging the funeral to respect Mum’s wishes gave me something to focus on and kept me busy in the two weeks following her death; the planning kept me going.

‘When the funeral was over, the kids and I returned home and the mood was a bit flat. It was a strange feeling, and I thought about getting started on making some tea! Just then, my phone pinged, and it was photograph of my friend wearing her party hat and holding up a glass to toast Mum. The next minute, another photo came through, and they kept on coming through the night. The kids and I took our own photo and I sent it around family and friends. It was so lovely as it brought us all together without actually being together physically.

‘Now that I know what’s involved in planning a funeral and expressing your wishes, it is definitely something I’d do with my loved ones. I felt proud to arrange Mum’s funeral because I knew exactly what she wanted; I had no regrets that I’d done or chosen anything wrong, and I knew I’d done her justice.’

To help you to think about your funeral wishes, Dying Matters and the National Association of Funeral Directors have produced a simple form, which lets you create a personal funeral plan that reflects you as an individual. Download it now

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