The Jessie May Skydivers extraordinary children and ...€¦ · Our new website has just launched!...
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“Friendly, approachable, professional, caring nurses” Supporting local terminally ill children Parent using Jessie May service www.jessiemay.org.uk Children’s Hospice at Home Autumn Newsletter Helen Williams has been working for Jessie May since 1999 and has devoted her career to working with children. She’s also spent her time with us supporting the families of children in her care, to try and make sure family life goes on as normal. Helen’s resolve to help children came from an incident that took place shortly after she began working. Here’s her story: “In 1979 I was working in a local hospital and a new born baby girl was referred to us from another local hospital. She had multiple problems, including Spina Bifida and Hydrocephalus (water on the brain). The condition was so severe, it was inoperable and she had no chance of surviving beyond her first few days of life. She spent her time in a clinical, dimly lit room and we were given instructions not to ‘let her get used to being handled’; not to talk to her, to pick her up or cuddle her. She wasn’t even given a Christian name. All we were allowed to do was give her morphine for pain relief and some water. This situation was distressing enough for all of us, but made even more so as neither of her parents came to visit her. We were told not to become too attached to her. For three days she lay in this room. For most of the time she was in complete isolation, there were no pictures on the walls – nothing for her to focus on and take in her surroundings. I couldn’t help myself – when no one was looking I would go into the room, talk to her and hold her for short periods of time. I couldn’t let this baby be on her own any more than she needed to be or Meet Polly ... Back in May, we were delighted with the news that Global Radio’s charity Make Some Noise were sending a cheque for £42,000 our way! Make Some Noise is a national scheme that supports small charities and projects across the UK, with the aim of making a difference to the lives of young people. The donation from Make Some Noise will provide nursing care for a year to around ten families in the local area. That nurse has now started and we’re happy to introduce you to Polly – the Global Make Some Noise Nurse for 2016/17. to die without knowing what it felt like to be touched or cuddled. Her parents never visited and she died on her third day with us. Attitudes are very different today and I know that every healthcare professional involved would do everything in their power to help make her as comfortable as possible. I am sure that, if she was born today, her complications would still be so severe there would be no change to her prognosis. The biggest difference would be in how the family would be supported to spend time with their baby. Had Jessie May have been around in 1979, they would have undoubtedly been able to support the family if they had chosen to take her home in her last few hours. I know that she would not have been left on her own in that clinical, dimly lit room to die alone. I have no idea what happened to her parents after this and whether they received any support or even if they came down to visit their daughter’s body.” This incident shaped Helens opinions of how children should be cared for, and she decided that she was going to dedicate her working life to caring for other children with complex needs. After qualifying for her Nursery Education Board qualification, Helen worked at St. James University Hospital in Leeds and Martin House Hospice in York, which was only the second children’s hospice to open in the UK. At Martin House she joined the hospice Care Team working in the hospice and providing overnight care to the children in their own homes. “Following overnight respite visits I would go home and take my own children to school before catching up Jessie May are proud to have a team of incredibly dedicated nurses who put children at the heart of their work... on a few hours’ sleep. Although sometimes I was physically exhausted, I knew my daily routine was still easier than the routine of many of the parents I provided care for.” Helen moved back to Bristol in late 1998. “I was made aware of Jessie May and its work and I decided to call them and see if they had any opportunities. Jessie May’s ethos of care fitted so much with my own – I knew from the point I first met them that I wanted to work with them. I have the great privilege of working with the most extraordinary children and families today. Although we know that our children are life limited most of them aren’t ‘dying today’. Therefore our work is about ensuring that they have the best quality time possible. Advances in technology and care practices help children to live healthier lives but it also places greater long term pressure on families. I strongly believe that the relationships we build with parents when we start working with them are vital. When children’s needs become more complex and sadly they die, I know the work we do years before will help ensure that we become a trusted support mechanism for the whole family, especially during the child’s end of life stage and for several years after their death.” Helen is the Bereavement Lead nurse at Jessie May. She helped set up the Purple Group, which is a safe space for bereaved parents to come and talk about their children. She says: “Some parents find that the support from friends and colleagues can taper off in the years after they have lost their child. We commit to offering bereavement support for five years after a child has died. We want parents to know that we are here for them for the long term.” Make some noise Thank you... * The Jessie May Skydivers for being brave and taking the leap for our nurses * To Brian Saunders for continuing to spread the word of Jessie May nurses at his theatre talks * Thornbury Rotary for making a splash at their swimarathon Jessie May * To Isabelle Stone and her friends for selling DVDs in their school playground * Bath Unity Players for all the drama and fundraising * To all the Jessie May Bristol 10k runners for going the distance * What’s Right for making a difference! * Sainsbury Warmley Hill for incredible local support * Tercon for their amazing ongoing fundraising * Bluefin for continuing to support our Nurses * Rider Levett Bucknall, for a perfect golf day! * Axa PPP for hosting our Networking event * Taylor Woodrow/Vinci hitting three peaks for Jessie May * Sean, Business Network Southwest, an amazing Master of Ceremonies * Ovation for providing office support when it’s needed the most * Lok’n’Store for our lock-up, space needn’t be an issue!! * TSB proving cake baking is an art form * Hilton Bristol, Boots Cribbs Causeway , Hush Therapy , Powder and Pearls & Horfield Reikites for the best pamper day ever! * Guildhall Chambers for their amazing generosity * ETS SW for rendering us speechless with their donation * Nani Huyu Charitable Trust * Global Make Some Noise * Needham Cooper Charitable Trust * Spielman Charitable Trust * The John James Bristol Foundation * The Albert Hunt Charitable Trust * The Axentis Michael Charitable Trust * Wallace and Gromit’s Children’s Charity * Robert Cowen * Morrisons Foundation * Douglas Arter Foundation * ACT Foundation * The Medlock Charitable Trust * Roald Dahl Marvellous Nurses Inventing Room * The Childwick Trust * Leeds Charitable Foundation * DHL Foundation * The Denman Charitable Trust * To all our regular donors for every penny of continued support! Our new website has just launched! Visit www.jessiemay.org.uk to have a look! Our new website has just launched! Visit www.jessiemay.org.uk to have a look! September Bristol Half Marathon 25th Jessie May Fundraising Masquerade Ball october 21st Pie & Pint Corporate Networking event November 17th Jessie May Family Christmas Party november 27th Tree of Light Celebration december 9th Bath Half Marathon march 12th London Marathon april 23rd 2016 2017 I have the great privilege of working with the most extraordinary children and families today “ ” Whats on? Win a Mulberry Bayswater We are delighted to announce that Mulberry have chosen to continue their Charity of the Year partnership with Jessie May for a second year. We’ve already had a fantastic year working with Mulberry, who have been incredibly supportive of the Jessie May Nurses, and we’re looking forward to the year ahead. As part of their sponsorship Mulberry have offered a unique opportunity to win a Mulberry Bayswater handbag that will be made bespoke to the winner’s specifications. The leather, lining, and other features can be chosen and the bag will be hand-made at the Mulberry factory in Somerset, making it a truly one-of-a-kind, money can’t buy prize. Raffle tickets are available now for just £5 each and the winning ticket will be drawn at the beginning of January. If you’ve received this newsletter by post, look out for the information on the letter included on how to secure your tickets, or you can buy tickets at www.jessiemay.org.uk/mulberry Closing Date: 1st January 2017 £ Jessie May’s Mulberry Enter for your chance to win a Bespoke Mulberry Bayswater Handbag* Bayswater Raffle Exclusive Prize Draw *See over for details Draw Date: 3rd January 2017 Closing Date: 1st January 2017 £ Jessie May’s Mulberry Enter for your chance to win a Bespoke Mulberry Bayswater Handbag* Bayswater Raffle Exclusive Prize Draw *See over for details Draw Date: 3rd January 2017 Registered charity number 1086048
Transcript of The Jessie May Skydivers extraordinary children and ...€¦ · Our new website has just launched!...
“Friendly, approachable, professional, caring nurses”
Supporting local
terminally ill children
Parent using Jessie May service
www.jessiemay.org.uk
Children’s Hospice at Home
Autumn Newsletter
Helen Williams has been working for Jessie May since 1999 and has devoted her career to working with children. She’s also spent her time with us supporting the families of children in her care, to try and make sure family life goes on as normal.
Helen’s resolve to help children came from an incident that took place shortly after she began working. Here’s her story:
“In 1979 I was working in a local hospital and a new born baby girl was referred to us from another local hospital. She had multiple problems, including Spina Bifida and Hydrocephalus (water on the brain). The condition was so severe, it was inoperable and she had no chance of surviving beyond her first few days of life.
She spent her time in a clinical, dimly lit room and we were given instructions not to ‘let her get used to being handled’; not to talk to her, to pick her up or cuddle her. She wasn’t even given a Christian name. All we were allowed to do was give her morphine for pain relief and some water. This situation was distressing enough for all of us, but made even more so as neither of her parents came to visit her. We were told not to become too attached to her.
For three days she lay in this room. For most of the time she was in complete isolation, there were no pictures on the walls – nothing for her to focus on and take in her surroundings. I couldn’t help myself – when no one was looking I would go into the room, talk to her and hold her for short periods of time. I couldn’t let this baby be on her own any more than she needed to be or
Meet Polly ...Back in May, we were delighted with the news that Global Radio’s charity Make Some Noise were sending a cheque for £42,000 our way! Make Some Noise is a national scheme that supports small charities and projects across the UK, with the aim of making a difference to the lives of young people.
The donation from Make Some Noise will provide nursing care for a year to around ten families in the local area. That nurse has now started and we’re happy to introduce you to Polly – the Global Make Some Noise Nurse for 2016/17.
to die without knowing what it felt like to be touched or cuddled.Her parents never visited and she died on her third day with us.
Attitudes are very different today and I know that every healthcare professional involved would do everything in their power to help make her as comfortable as possible. I am sure that, if she was born today, her complications would still be so severe there would be no change to her prognosis. The biggest difference would be in how the family would be supported to spend time with their baby. Had Jessie May have been around in 1979, they would have undoubtedly been able to support the family if they had chosen to take her home in her last few hours. I know that she would not have been left on her own in that clinical, dimly lit room to die alone.
I have no idea what happened to her parents after this and whether they received any support or even if they came down to visit their daughter’s body.”
This incident shaped Helens opinions of how children should be cared for, and she decided that she was going to dedicate her working life to caring for other children with complex needs.
After qualifying for her Nursery Education Board qualification, Helen worked at St. James University Hospital in Leeds and Martin House Hospice in York, which was only the second children’s hospice to open in the UK. At Martin House she joined the hospice Care Team working in the hospice and providing overnight care to the children in their own homes. “Following overnight respite visits I would go home and take my own children to school before catching up
Jessie May are proud to have a team of incredibly dedicated nurses who put children at the heart of their work...
on a few hours’ sleep. Although sometimes I was physically exhausted, I knew my daily routine was still easier than the routine of many of the parents I provided care for.”Helen moved back to Bristol in late 1998.
“I was made aware of Jessie May and its work and I decided to call them and see if they had any opportunities. Jessie May’s ethos of care fitted so much with my own – I knew from the point I first met them that I wanted to work with them.
I have the great privilege of working with the most extraordinary children and families today. Although we know that our children are life limited most of them aren’t ‘dying today’. Therefore our work is about ensuring that they have the best quality time possible. Advances in technology and care practices help children to live healthier lives but it also places greater long term pressure on families.
I strongly believe that the relationships we build with parents when we start working with them are vital. When children’s needs become more complex and sadly they die, I know the work we do years before will help ensure that we become a trusted support mechanism for the whole family, especially during the child’s end of life stage and for several years after their death.”
Helen is the Bereavement Lead nurse at Jessie May. She helped set up the Purple Group, which is a safe space for bereaved parents to come and talk about their children. She says: “Some parents find that the support from friends and colleagues can taper off in the years after they have lost their child. We commit to offering bereavement support for five years after a child has died. We want parents to know that we are here for them for the long term.”
Make some noise
Thank you...
* The Jessie May Skydivers for being brave and taking the leap for our nurses
* To Brian Saunders for continuing to spread the word of Jessie May nurses at his theatre talks
* Thornbury Rotary for making a splash at their swimarathon Jessie May
* To Isabelle Stone and her friends for selling DVDs in their school playground
* Bath Unity Players for all the drama and fundraising
* To all the Jessie May Bristol 10k runners for going the distance
* What’s Right for making a difference!
* Sainsbury Warmley Hill for incredible local support
* Tercon for their amazing ongoing fundraising
* Bluefi n for continuing to support our Nurses
* Rider Levett Bucknall, for a perfect golf day!
* Axa PPP for hosting our Networking event
* Taylor Woodrow/Vinci hitting three peaks for Jessie May
* Sean, Business Network Southwest, an amazing Master of Ceremonies
* Ovation for providing office support when it’s needed the most
* Lok’n’Store for our lock-up, space needn’t be an issue!!
* TSB proving cake baking is an art form
* Hilton Bristol, Boots Cribbs Causeway, Hush Therapy,
Powder and Pearls & Horfi eld Reikites for the best pamper day ever!
* Guildhall Chambers for their amazing generosity
* ETS SW for rendering us speechless with their donation
* Nani Huyu Charitable Trust
* Global Make Some Noise
* Needham Cooper Charitable Trust
* Spielman Charitable Trust
* The John James Bristol Foundation
* The Albert Hunt Charitable Trust
* The Axentis Michael Charitable Trust
* Wallace and Gromit’s Children’s Charity
* Robert Cowen
* Morrisons Foundation
* Douglas Arter Foundation
* ACT Foundation
* The Medlock Charitable Trust
* Roald Dahl Marvellous Nurses Inventing Room
* The Childwick Trust
* Leeds Charitable Foundation
* DHL Foundation
* The Denman Charitable Trust
* To all our regular donors for every penny of continued support!
Our new website has just launched! Visit www.jessiemay.org.uk to have a look!Our new website has just launched! Visit www.jessiemay.org.uk to have a look!
September
Bristol Half Marathon
25thJessie May
Fundraising Masquerade Ball
october
21stPie & PintCorporate
Networking event
November
17thJessie May
Family Christmas
Party
november
27thTree of Light Celebration
december
9thBath Half Marathon
march
12thLondon
Marathon
april
23rd
2016 2017
I have the great privilege of working with the most
extraordinary children and families today
“ “ ”
Whats on?
Win a Mulberry Bayswater
We are delighted to announce that Mulberry have chosen to continue their Charity of the Year partnership with Jessie May for a second year. We’ve already had a fantastic year working with Mulberry, who have been incredibly supportive of the Jessie May Nurses, and we’re looking forward to the year ahead.
As part of their sponsorship Mulberry have offered a unique opportunity to win a Mulberry Bayswater handbag that will be made bespoke to the winner’s specifications. The leather, lining, and other
features can be chosen and the bag will be hand-made at the Mulberry factory in Somerset, making it a truly one-of-a-kind, money can’t buy prize.
Raffle tickets are available now for just £5 each and the winning ticket will be drawn at the beginning of January.
If you’ve received this newsletter by post, look out for the information on the letter included on how to secure your tickets, or you can buy tickets at
www.jessiemay.org.uk/mulberry
Closing Date: 1st January 2017
£
Jessie May’s Mulberry
Enter for your chance to win
a Bespoke Mulberry Bayswater Handbag*
Bayswater RaffleExclusive Prize Draw
*See over for details
Draw Date: 3rd January 2017
Closing Date: 1st January 2017
£
Jessie May’s MulberryEnter for your chance to win
a Bespoke Mulberry Bayswater Handbag*
Bayswater RaffleExclusive Prize Draw
*See over for details
Draw Date: 3rd January 2017
Registered charity number 1086048
We are delighted to be able to
raise money for Jessie May during
the new season and to be able to
help support them in their work to
provide children with life-limiting
conditions the best possible care.
Jessie May makes a huge diff erence
to children in this region and I urge
everyone to learn more about the
work that they do.
My donation 2
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Jessie May, 35 Old School House,
Kingswood Foundation Estate,
Britannia Road, Bristol BS15 8DB
Tel: 0117 961 6840 Email: [email protected] or visit
www.jessiemay.org.uk Registered charity No. 1086048
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EmailWelcome to our Autumn newsletter! This time we’ve got some great news from the Fundraising team about some exciting new partnerships and the fantastic raffle for a Mulberry Bayswater handbag.
Our team here at Jessie May is continuing to grow and we’ve welcomed new starters in almost every department over the past six months. You’ll hear from some of them in this newsletter. Our new partnership with Naomi House means we have now expanded our hospice at home service into Swindon and Wiltshire. You can meet the new nurses working in this area in this newsletter.
I hope you enjoy reading the stories about what’s been going on at Jessie May. Chris Roys – CEO Jessie May
You may have recently heard that Jessie May has joined forces with Great Western Hospitals NHS Foundation Trust and Naomi House & Jacksplace. This is an exciting new partnership that will allow us to bring our children’s hospice at home service to families in Swindon and Wiltshire.
Naomi House & Jacksplace hospices provide expert hospice care to more than 280 life-limited and life-threatened children, young people and their extended families from Hampshire, Wiltshire, Dorset, Berkshire, West Sussex, Surrey and the Isle of Wight.Our three fantastic nurses Jo Conroy, Mary Hunt and Sam Robson started working with families in the area back in April and are seeing a huge response to the service they’re providing. Jo says “We’re currently looking after twenty-two families in the area and they’re all lovely. Everything is going really well!”
WelcomeFrom
Chris Roys
CEO, Jessie May
We won!
A huge thank you to everyone who supported our bid at the Big Lottery Fund and voted at The People’s Projects for the Jessie May entry ‘Hidden from View but not Forgotten - improving the quality of life for young carers looking after terminally-ill siblings’. We are delighted to tell you that our project won for the West Country East region!
The project was designed to recognise the estimated 400,000 young carers in the UK. While their friends are out playing or attending after school clubs these young people, from a very early age, have huge responsibilities to care for the needs of their loved ones. From relatively small things like fetching drinks and helping to
dress them, to hugely important tasks such as administering medication and feeding through tubes, these children often sacrifice their own childhood to provide support to family members.
You might remember in our last newsletter we featured the Badman family. Ann Marie and Lee have an 8 year old daughter Nisha, and 5 year old Kayla, who was diagnosed with an atypical form of Rett Syndrome and epilepsy at the age of two and a half. The visits from their Jessie May Nurse Caroline mean they can take Nisha out and spend some special time with her, safe in the knowledge that Kayla is receiving the best possible care at home.
Winning the grant means we’ve been awarded £50,000 to expand our hospice at home service and help more families like the Badmans. We’d like to say a special thank you to the Badman family, and thank you to everyone who supported, promoted, and voted for us!
In August we also welcomed a new member of the fundraising team, Debbie Clark, who will be working specifically in Swindon and Wiltshire.
Welcome to Wiltshire
The Big Lottery Fund
&The People’s Projects
At Jessie May we’re dusting off our waistcoats and bow ties, because we’re about to launch an exciting new partnership with World Snooker!
The international tournaments kicked off back in June in Latvia and we’ll be getting involved with events around the UK from October. World Snooker will be raising funds for us at the annual World Snooker Awards in May 2017, through generous tournament sponsorships, and throughout the season any fines the players accumulate will be donated to Jessie May. Forgive us if we’re secretly hoping for some poor behaviour!
The partnership with World Snooker means we have a unique opportunity to talk about the work Jessie May does around the country.
World Snooker
“
“ ”
“ ”
Barry Hearn, World Snooker Chairman
Our new website has just launched! Visit www.jessiemay.org.uk to have a look!
Caring @ Work
Caring @ Work is our scheme that allows local businesses to raise money for Jessie May. We give them a challenge: to raise £1,000 over the course of the year however they like. Some of our corporate partners raise money through dress down days, bake sales, or incredible challenges like running marathons and climbing mountains!
We support our Caring @ Work partners in lots of different ways; with networking events, fundraising packs, volunteering opportunities and PR opportunities as we seek coverage of Caring @ Work events.
For more details on how you can get involved with Caring @ Work please contact Lindsey on 0117 958 2174, or email:[email protected]
City West Commercials
In MemoryTessa Moore aged 5 weeks
Our new website has just launched! Visit www.jessiemay.org.uk to have a look!
