Hospice News October 2020

No.147 | October 2020

Help us be there when it matters most

Hospice News

Welcome to your latest edition of Hospice News Every year thousands of people in our community will be affected by life limiting illnesses.

I’m a Community Nurse Specialist, working with patients in their own homes.

We help patients navigate choices about how they live and die, manage difficult symptoms and support them emotionally.

We are there when it matters most.

Over the past few months life has changed dramatically for the community team, as it has for us all, but regardless of what’s going on in the world, we are still here providing vital services seven days a week. The Community Nurse Specialist team is just one of the services your support helps provide. Sadly there has never been a greater demand for our services, as other healthcare systems are being stretched. It’s a huge challenge especially in light of the ongoing financial uncertainty for the Hospice. In this edition you’ll get an update on our current position, and the things you can do to help. On behalf of all of our nurses, please consider making a donation so that we can continue to be here, now and in the future.

Contents CEO interview

4-5

Jenny's story

6-7

Get involved

8-10

Funding news

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Shopping

12-13

John's story

14-15

Our holistic care 16-17 Puzzle

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Thank you so much for the support that you give us and for being part of our family. You are our heroes!

Joel Cullen Community Nurse Specialist

Enquiries: 0117 915 9400 24/7 Clinical Advice Line: 0117 915 9430 stpetershospice.org 2

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WILL YOU HELP ME WHEN IT MATTERS MOST?

Every day people like Steve need comfort through fear and anxiety, a voice at the end of the phone, a nurse on the doorstep.

With your support we will continue to be just that.

There’s nowhere else like St Peter’s but our care and support is under threat.

DONATE NOW TO MAKE SURE WE’RE HERE WHEN IT MATTERS MOST.

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An interview with our CEO, Frank Noble Since our last newsletter when we shared the current financial situation of the Hospice, many of our supporters have asked us questions about what’s next for us and how they can help. Our CEO Frank answers some of your questions.

Is there an update on your financial situation?

We are working hard to understand “exactly” where we are financially, as much as anyone can in such complex times. There are still many uncertainties. We don’t know what the virus will do in the future or its impact on our ability to fundraise. We don’t know if there will be more support from government or the NHS. What we do know is that without further funding we expect a deficit of at least £2m this year but it could be higher.

If we don’t receive more income and change some of the ways we operate, the deficit will only get bigger and will threaten the existence of the Hospice.

What cuts do you have planned?

Making decisions that impact our services is not easy. There is so much to consider and cost is just one aspect.

For example the changes to our Day Services are down to the impossibility

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of bringing together even small groups of vulnerable patients at the Hospice. We expect Day Services to remain closed in its original format for a significant period. In the meantime we are getting ready to offer many of the services remotely. The decision to reduce beds in the IPU down to 10 from 15 is down to reduced staffing levels –and we feel we are not in the position to hire or use agency support with our current financial situation.

Won’t the government or NHS support you?

Hospices like ours benefitted from additional support from government grants, which ended in July. Without these our situation would have been much worse. In normal times 19% of our funding comes from our local NHS commissioning group. They are extremely sympathetic to our position but as you can imagine the

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just returning the Hospice to full service for the midterm but also long term sustainability. In 2019 it cost us around £8.7million to run the service, with costs increasing year on year. We need to be able to provide a service that we can afford with our current funding levels and that means taking the opportunity to understand how we can work more efficiently.

NHS budgets are extremely stretched.

We are working very closely with them to explore future support.

Does the Hospice have reserves (savings) that can protect it?

Thanks to your past support, we had reserves (savings) that we could use during the past few months. Without significant additional funding or cost cutting we will deplete reserves and not be in a position to face future shocks.

Like any well managed organisation we have to keep some reserves to support ourselves in the future in case there is another unforeseen crisis.

How much money is needed to restore the hospice to full service?

Sadly there is no straight forward answer as we have to consider not

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How will patient care be affected?

Every decision we take is guided by the aim of minimising the impact on patients.

We’re working hard to preserve the core of our traditional services and also how we harness technology to keep providing high quality holistic and compassionate care focussed on patients, families and carers.

How can I help?

The hospice exists because of the generosity of our supporters and we have never needed you more.

Throughout the newsletter you’ll find opportunities to get involved and help the Hospice. The letters, emails and calls from you over the past few weeks have given us all a massive boost and we can’t thank you enough for reaching out. We know that with your help we will be there when it matters most. Thank you.

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Jenny's story Hi, I’m Jenny. I’ve had support from a Community Nurse Specialist from the Hospice in the past, but more recently I stayed on the Inpatient Unit during the coronavirus pandemic.

Before we went into lockdown I was also attending Day Hospice, I’d been to four sessions and I loved it.

Lockdown was incredibly isolating for me. My family don’t live near me and because I was shielding I was completely cut off. No-one could come and see me and for a period of that time I also lost the ability to walk – I had to hold on to the radiators to get around the house. That was around the time that I came into the Inpatient Unit at St Peter’s. It was an enormous relief.

I didn’t feel any kind of concern about leaving my home during the pandemic, I wasn’t functioning alone at all.

I’d been on my own for four months, and I was starting to feel quite desperate about how I’d cope for much longer. Even small things like getting some shopping were impossible, and for a time I couldn’t get out of bed. It’s only now when I look back that I realise just how lonely and vulnerable I felt. When I spoke to my family on the phone I wouldn’t confide how I was actually feeling

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as I didn’t want to upset them, but when I’m at the Hospice with the staff and people who are in a similar situation to me, I can be completely honest. It’s such a huge relief.

The staff here have been so good to me, I’m not alone any more. I’d completely lost my confidence and now I have it back. If I’m honest, I can’t believe such kindness exists, it’s quite an inspiration. Nothing is too much trouble for them, they’re really exceptional. I’ve been spoilt really!

I haven’t felt at all worried by the pandemic whilst I’ve been here, I’ve been supported every step of the way and I’ve never been left alone.

If I could give any advice to someone who’s going through the process of being referred to the Hospice I would say don’t be afraid, be courageous and you will reap the benefits. You’ll experience such love in the way you’re cared for. You will be helped beyond belief and you’ll come out of it a different person.

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"I can't believe such kindness exists" Jenny

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Leave a legacy Help our family be there in the future A gift in your will means that there is Hospice care for patients and their families when it matters most. It’s an important legacy that directly impacts thousands of lives every year.

"She was amazing and such a support to both of us"

Every one of us at St Peter’s Hospice, from Kate the consultant to Bill the driver, is devoted to the comfort and care of patients and their loved ones.

“My husband Geoff and I were married for 55 years. It was a whirlwind start; we got engaged after three weeks and were married five months later. We then went onto have a family, travel the world and live a happy life together.

Their incredible level of care is only possible because of the kindness and generosity of people like you. A third of our services are directly paid for by gifts in wills.

A gift of this nature will help ensure every family has compassionate expert care when they need it most for years to come.

If you are considering leaving a gift to St Peter’s Hospice, we can help you. Please get in touch at legacy@ stpetershopsice.org or call 01275 391 432 and ask to speak to Becky or Louisa.

Thank you.

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When Geoff was given a terminal diagnosis he was given eight months. He remained very well right up until the last few weeks. Initially we were supported at home by Carolyn, our Community Nurse Specialist. She was amazing and such a support to both of us. Geoff went into the Inpatient Unit for the last few days of his life where he died in November 2010.

Leaving a gift in my Will to St Peter’s Hospice, gives me comfort to know that it will help contribute to someone else having the benefit of a Community Nurse like Caroline, to offer support and guidance at a time when they are at their most vulnerable”.

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Make a donation: 01275 391400

Activities Upcoming fundraising dates for your diary Grand Christmas Raffle 2020 Launch 12 October, draw 16 December Our Grand Christmas Raffle is an annual St Peter’s tradition. This year one lucky winner will take home £5000 and there are many more amazing prizes on offer.

By taking part in our Raffle you’ll be helping to support patients and families in the Bristol area when they need it most. Last year’s raffle raised an incredible £47,000 for the Hospice, which is enough for five patients to receive care on our Inpatient Unit.

Tickets cost £1 and we have a selection of jaw-dropping prizes which could be yours! This year’s Grand Christmas Raffle launches Monday 26 October with the draw taking place on Tuesday 22 December. Tickets will be sent out later this month, or you can visit our website or pop in to your local shop to buy your tickets and be in with a chance to win £5,000!

Licensed by the Gambling Commission (www.gamblingcommission. gov.uk) You must be 16 or over to purchase or sell draw tickets.

Promoter: Jayne Clarke, Director of Income Generation.

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Walk to Remember 15 November, Ashton Court Take a moment to remember someone special at Walk to Remember, and join us for a three mile family walk in peaceful surroundings before adding a message to the Memory Tree. This sponsored family walk goes through the beautiful grounds of Ashton Court so you’ll walk through woods, deer parks and past the iconic mansion house with views across the city.

After the walk, write a favourite memory, thought, photo or message for a loved one on a memory tag and tie it on the tree. There will be extra safety and social distancing measures in place throughout the day, so that we can come together safely.

Registration costs £10 for adults, £5 for under 16s and free for under 3s and four-legged friends.

Register by visiting our website at: stpetershospice.org/walktoremember

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Hospice News

Light Up a Life Virtual service: Saturday 12 December at 5pm

Please join us for a special service this December where we’ll be remembering all of those we have lost.

Light Up a Life is a chance for supporters to remember a loved one at a particularly hard time of the year.

This year’s service will take place on Saturday 12 December at 5pm. Due to Covid-19 restrictions we won’t be holding services at Bristol Cathedral or The Salvation Army this year, but instead holding one event at the Hospice which we welcome you to watch live online in the comfort of your own homes.

There will be readings, poems, music and a moment of reflection where we will be lighting candles in memory of all those we have lost. We also invite you to light a candle at home in memory of someone you have lost.

The Book of Remembrance Entering a loved one's name into our beautiful handbound Book of Remembrance is a special way to commemorate someone’s life. Your loved one’s names will be inscribed in the book by a skilled calligrapher creating a permanent record in their memory. If you’d like to remember someone special in this way, please visit www.stpetershospice.org/ remembrancebook or call 01275 391400.

The book will be available for private viewings at the Hospice the week following the remembrance service, providing the situation with the pandemic doesn't prevent it.

How to join the service Please register your place at www.stpetershospice.org/support-us/light-up-a-life or call 01275 391400 to join the live service 10

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Homeless and facing a life limiting illness All the time we hear our patients say that facing a life limiting illness really makes you realise what’s important in life. Things like family, home, safety and security. But what if you don’t have those things?

We’re absolutely delighted to announce that we have been awarded funding from the Masonic Charitable Foundation and Hospice UK to spend 12 months working on improving Hospice access for people in our community who live on the street and in hostels.

Bristol has one of the highest homeless populations in the UK and the life expectancy for someone who is or has experienced homelessness is shockingly only 45 years old. It’s common for people to struggle to engage with mainstream services as a result of often chaotic lifestyles, and alcohol and substance misuse when homeless. With limited social networks around and being isolated from family, the impact on those with end of life care needs is huge, and accessing the right care is just another challenge to add to the list.

To carry out our work in this area we will link up and work collaboratively with local homeless health service providers, in particular Bristol’s Homeless Health Service (The Compass Centre), University

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Hospitals Bristol and Weston’s Homeless Support Team. We’ll also partner with local hostels and street outreach teams, visiting and carrying out education sessions about end of life care to increase their staff's understanding and awareness of the subject. We’ll develop end of life resources for them to have on hand, and let them know who they can contact if they need support. Another thing we’ve identified is that currently there is no forum for identifying people who are homeless and thought to be at the end of life, this grant will allow us to create one.

Whilst over the years we have provided some end of life care and support for people experiencing homelessness, largely through the work of our Community Nurse Specialist team, it’s not been without its challenges. The need is for end of life care that is tailored, sympathetic and specific to the needs of this extremely vulnerable group. This grant is a huge milestone for us in our commitment to serving the diverse needs of our community, and we are so grateful for the opportunity to have a significant and meaningful impact.

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Look good, do good, spend less We're so happy to have welcomed so many of you back into our shops in the last few months. All 50 stores are now up and running, and our staff and volunteers are there to make sure your shopping experience is the best it can be.

In a normal year our shops would contribute around ÂŁ2.8m of vital income to the Hospice. Every time you donate or shop with us you are making a massive difference. Buying second-hand is also much kinder on your wallet, and provides jobs and volunteering opportunities in our community. So it really is a winwin situation! At a time like this, our shops are needed more than ever.

Donate to help out When you’re having your next clear out, please think about dropping a bag or two to one of our shops. Right now we would really love to have donations of winter woollies, snuggly coats and scarves and anything else that keeps you warm in the winter. Items need to be clean, of good quality and in good condition otherwise we have to spend money on disposing them.

Online Christmas Market For the first time ever our Christmas Market is going online. We can't do the physical market this year but you can get all sorts of festive goodies from the online market on Facebook. Search for the page @sphchristmasmarket.

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Have a greener Christmas with St Peter's Hospice Christmas is a wonderful time of the year, but equally it can be a wasteful time with many of us spending far more than we intended.

Just as we are getting to grips with trying to live less wastefully (carrying reusable cups, shopping responsibly, etc.) along comes Christmas.

The good thing is Christmas doesn’t have to be expensive or wasteful.

When you give a gift from a St Peter’s shop, not only will you be helping the Hospice and our patients, but you’ll be helping to make a positive impact on the planet by reducing the number of items that end up in landfill.

We have pre-loved items that make great gifts for the whole family, as well as stocking fillers and that perfect Secret Santa present! All this alongside our usual diaries, teddy bears and Christmas cards. This year you can find our Christmas card catalogue on our website. This festive season we can do good and spend less by shopping with St Peter’s.

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Send some Christmas cheer!

Let someone know you're thinking of them and help the Hospice by buying your Christmas cards with us.

Now available in your local store and online at stpetershospice.org

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John's story Hi my name is John and I was told in January 2018 that I had CCL which stands for Chronic Lymphocytic Leukaemia.

I’d never heard of it before so it was really scary at first, although my doctor told me that it’s manageable with tablets. That went on for nearly two years until January this year when it unfortunately changed.

I was told I had lymphoma, and that the lumps that were there before had come back again.

Being referred to the Hospice was scary as well. I thought they were going to take me from my house and put me in the Hospice where I’d just wait for the end. You just hear the word hospice and think, that’s it for me. But it’s not like that at all, in fact, I’ve had all of my support at home. I’ll never forget the day I had my first phone call with Emma, my Community Nurse Specialist. She put my mind at ease, the support she gave me was great.

Talking to her really helped me cope with what I was facing and made me realise it’s not the end. It was really reassuring and I’ve actually managed to go back to work so she was right!

I didn’t think COVID-19 would affect me, but it definitely did. About mid-

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March when we were locked down and no-one knew much about it, I thought I was going to get it. I thought it would come into the house and it would kill me. I was really worried, but as the months went on and more was understood it was ok. It has meant that I haven’t met my nurse Emma in real life yet, but we’ve had some brilliant conversations on the phone and I feel totally supported by her.

Since being referred I’ve learnt that hospice is not a bad word. They are there to help and support you through the bad times. If I could say one thing to Emma it would be thank you for listening to me waffling on about everything that has happened to me! She’s has been such a great help.

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"I'll never forget the day I had my first call with my Community Nurse Specialist" John

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What makes hospice care stand out Hi I’m Anjali, the Medical Director here and a Consultant in Palliative Medicine.

During my career, I’ve had the privilege to provide palliative care to patients in both NHS hospital and hospice settings.

I’ve been working at St Peter’s Hospice since 2015. I love working here and love being part of the holistic care that we’re able to offer to our patients, whether at home or in our Inpatient Unit.

What makes hospices different to anywhere else is the space and time we can give to understanding each patient’s individual needs when it comes to living with advanced illness.

We have a purposeful focus on a person as a whole, this means supporting them physically, psychologically, socially and spiritually. Our staff have a high level of expertise and aim to hold and support people through the times when they need it most.

In my experience, working in hospitals to provide palliative care to patients was really rewarding but it came with its challenges. Hospitals do a great job

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of fixing people, so sometimes it can be difficult to accept and manage a problem or diagnosis that can’t be fixed, such as progressive advanced illness.

Here at the Hospice we try to look beyond the physical impact of illness, to understand how every facet of a person’s life is affected. The wider impact can be significant. An example of this is how we approach pain management. In a busy GP surgery or hospital ward, there may be less time to explore why someone is in pain, at the Hospice we can do that.

Pain can be triggered and intensified by a range of factors like anxiety and fear and it’s important that we’ve got to the root of this before we decide on the appropriate management plan. If we don’t address these things, we’re unlikely to achieve the best pain control.

Recently, a person admitted to our Inpatient Unit from hospital came over

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in significant pain. Ten days later, they left the unit to go home, transformed through a combination of careful painkiller management, complementary therapy, time in the garden and a chance for them and their family to chat through their hopes and fears with the ward staff. That was wonderful to see.

As you may already know, the majority of the care we provide is in people’s homes through our community teams, who offer a range of services from advice and support to practical hands-on nursing care. These teams work hard to help our patients focus on living and making the most of the time they have left.

Our patients also have access to our 24-hour Clinical Advice Line. Prompt advice can be helpful in avoiding unnecessary GP or hospital visits.

Towards the end of life, many patients express the wish to die at home, surrounded by the people they love. Our care and support can help achieve this.

If we lived in a world where we weren’t here to provide this care, some patients might struggle with their symptoms and problems, and may not feel supported to die at home.

"We hold and support people through their whole journey" Anjall

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I strongly believe that holistic care is the key to help people achieve positive outcomes, where they can feel more comfortable and cared for.

To all of you who support the Hospice, I would like to say a big thank you for making this possible for our patients.

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Take a break Find the following 27 capital cities to be in with a chance of winning a £20 voucher for our shops!

Tehran Athens Pyongyang Zagreb Kuala lumpar Windhoek Madrid Baku Bratislava Riga Paris London Port moresby Sofia 18

Canberra Nicosia Palma Reykjavik Warsaw Rome Lima Bern Islamabad Doha Ankara Male Oslo

Send your completed crossword to us or take a photo and email it to website@stpetershospice.org.

Be sure to include your name and contact details. The winner will be picked at random and contacted on 6 November. The discount does not apply to new goods. Your total spend (less the value of any new goods) must be £20 or over. The voucher can only be used once and must be handed to the cashier to claim the offer. Only valid in St Peter’s Hospice shops, not eBay or our coffee shop.

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HELP US BE HERE WHEN IT MATTERS MOST.

Every year, thanks to your generosity, 1000’s of people like Lesley have the comfort and expert care they need when it matters most.

We have lost over £2million in funding this year – every week diminishing our ability to help those at home, those in need of specialist care and those that need support through bereavement.

We are having to make devastating cuts to staff and services which means we are simply not able to help as many local patients and families.

DONATE NOW TO MAKE SURE WE’RE HERE WHEN IT MATTERS MOST. stpetershospice.org/donate 01275 391 400 Follow us

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Thank you

You are amazing. You are helping us be there when it matters most.

No matter what the future holds, with your support we’ll be here for you.