Friends of the Freemasons Issue 2 - 2022
In this edition... A message from Chris
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Celebrating 21 years of caring
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Hospice at Home
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Support from a Freemason
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29 Chapter chose us!
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Giving families an opportunity to recharge
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It was like we died
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Support in 2021
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An evening with Richard House
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Request a speaker
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Get involved
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Welcome At Richard House we know that every birthday is special. We understand how important it is for our children, young people and families to celebrate each birthday, creating and capturing memories that will be shared for years. Last year we celebrated our own special birthday, 21 years after the hospice first opened its doors. So much has happened in those 21 years, at Richard House and beyond. The world today feels very different and much of what Richard House brings to our community is also very different. Technology allows us to support our children, medically, emotionally and socially, in ways we could not have imagined 21 years ago. Yet at its heart Richard House continues to do exactly what it has done every day since it opened: to accompany our children, young people and families during their journey through life to death, creating positive experiences along the way which become good memories for the future. Thank you for making this possible. For the last 21 years, your support has kept the doors of Richard House open… Page 2
Like anyone reaching their 21st, we can reflect on some incredible moments and some tough ones too. We take pride in what we have done but we also recognise the responsibility we have to be there for all those who will need us in the future. We hope you will enjoy hearing about our recent activities in this issue. You’ll see we have lots more planned and we are hoping these can go ahead without any of the disruptions we have all experienced over the last 18 months. Do take time to read the wonderful interview with our founder and Life President, Anthea Hare, on how Richard House became a reality. You will see it took great dedication and determination from Anthea and those she united around her vision. Whether you are a new supporter or have been with us for every one of our 21 years, thank you for sharing our belief in the wonderful service Richard House provides and for making it possible for us to celebrate many more birthdays.
Yours sincerely and fraternally, Nicola Ukiah Chair of Trustees
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A message from Chris.. I wanted to briefly explain how Freemasonry is making an incredible impact on the lives of seriously ill children across the capital. I’m not going to do that with lots of numbers or statistics, I’m just going to tell you 2 short stories It starts soon after I joined Richard House nearly 3 years ago. I was helping a palliative care nurse to a pick up a family whose young son suffered from a muscle-weakening condition. I’d been invited along to see the difficulties families have in just leaving the house For any parents reading this, imagine this situation. This is what mum and dad needed to take to help manage their child’s symptoms and make sure they were comfortable throughout the day. Picture what you’d take. I remember it was just box upon box of equipment, just to attend a 2-hour session at the hospice. A suction machine, a nebuliser, a VEST system….A Cough Assist, an oxygen concentrator and spare tank….Structures to support their body. Specialised feeding tubes, pump, swabs, sterile gloves and medication.
Ok – not every child will need all of this but some might need even more. The point is - it took us over an hour to leave the house and, for many families, this is the case every single day. Back then, if a family called to ask for support leaving the house we often had to say we couldn’t help. Simply because we didn’t have enough nurses, or volunteers, or the one car we did have was in use. We needed people. We needed the help of people like you to make a difference and change that situation. Fast forward just 2 years and I’d be sitting at home in the midst of COVID. A lot of our team was on furlough and I picked up a call from a family we’d been supporting. Unfortunately, that afternoon, they were stuck. The dad had tested positive for COVID and needed to self-isolate in their caravan that was parked on the driveway, leaving his wife with the daunting prospect of looking after their lifelimited child 24/7 on her own. Page 4
Complications during birth meant that the child was paralyzed and was on a ventilator. The family needed urgent help Unlike before, things had changed. A Richard House nurse was able to conduct a home visit within the hour. Dad was able to isolate and mum was given the support she needed by one of our incredible nurses. This was all thanks to our new Hospice at Home service! This small scale programme had rapidly accelerated because of COVID-19 but we still found that demand massively outpaced our ability to supply. Today, we have more nurses who have been able to deliver nearly 4,000 hours of care last year alone. It’s because of people like you choosing to nominate us at your meetings, because of organisations like Freemasonry choosing to support us, that we have got this far. But there is more we need to do. The last 18 months have been challenging for everyone – locked in, protecting the ones we love, finding it difficult to find just 5 minutes peace. Now imagine that every day. No let up. No rest. No self-care. This is what the families caring for a child with a life limiting condition do. Day in, Day out!
Although national restrictions have lifted, Richard House still faces an uncertain future. We now believe that this year may be more of a struggle for raising funds than last, now that emergency funding grants and government COVID support are no longer available. When COVID allows, I look forward to welcoming you to Richard House to meet some of the wonderful families and nurses that you’ve helped first hand. So, as you read this magazine, don’t think of your support as just a cheque or £5 in a collection….
Chris Williams
Head of Community Fundraising & Events chrisw@richardhouse.org.uk
Think of it as helping a father get the good night’s sleep. Think of it as giving a mother the confidence to look after her child and, most importantly, think of it as helping a vulnerable child and their family enjoy what time they have left. Page15 5 Page
Celebrating 21 years of Caring We have learnt much from these children and their parents/carers who are in many ways the building blocks of Richard House. Every child and every family member matters to us and I am proud that we could be there particularly during the lockdown and now. Anthea Hare – Founder and Life President
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Hospice at Home As told by Senior Play and Care Worker, Sukaynah I have been carrying out Hospice at Home visits with 18-month-old Murshid and his family on a weekly basis over the past 6 months. Parents or carers may request that specific activities are carried out during each visit, based on the variety of medical needs that each of our life-limited children have. Some parents might use Hospice at Home as an opportunity for their seriously ill child to enjoy vital, sensory play as an example. A Hospice at Home visit with Murshid involves a variety of different play activities. Murshid can’t walk or move and therefore massage also helps to strengthen his body and provides the opportunity for him to have human interaction, as life limited children often don’t have the opportunity to interact with others. Sensory play encourages Murshid to become more aware of different sounds and textures. His portage worker suggested sensory books as a great way to help him develop. With his mum frequently providing round the clock care for Murshid, I took the opportunity to create a sensory book for him, enabling his mum to tend to important tasks around the household. Hospice at Home frees up some time for parents and carers to do the everyday things in life. The sensory book I created includes items with a variety of different textures and feels including foil, feathers and sponges. It’s great to see Murshids facial expressions during sensory play, you can tell he really enjoys it, it settles him, he is non verbal but hearing his laugher is really heartening. Hospice at Home is also an opportunity for Murshid to try new things and so we often create art. The week before mother’s day we created a card for his mum, and it brought a big smile to her face when she saw it. Murshid is a big fan of Peppa Pig, when he is not enjoying Hospice at Home activities he likes to catch up with the latest in Peppa’s world, but we Page 8
try and make the most of the visits by ensuring he has plenty of interaction, primarily. Hospice at Home has been beneficial for the whole family particularly during lockdown, as going outside is limited for the family as they are shielding. It’s lovely to see Murshids siblings get involved in some of the activities and interact with their brother. His older sisters enjoy talking about everyday things with me whilst I am there, and being there to care for Murshid also enables them to have their own time out as children, away from the responsibilities of helping to care for a sibling with life-limiting illness. The visits also enable Murshids mum and I to bounce ideas off one another to build his development. I love that! His Physiotherapist suggested a variety of activities to help with his development, and his mum and I were able to come up with the idea of sitting him at the table for messy play as part of this; We can still do many things with Murshid step by step and he will develop in his own time, in his own way.
Murshid’s Mum… We receive Hospice at Home care 6 hours a week, as my 18 month year Old son Murshid has life-limiting illnesses. Complications during birth meant that he had a lack of oxygen and spinal cord injury. As a result, he is paralysed and requires the use a ventilator. Hospice at Home has helped me a lot, Play and Care Worker Sukaynah organises plenty of sensory games for my son which helps greatly with his development. It is easy for me to talk to Sukaynah and each visit means that I can do everyday things like grocery shopping, housework, the washing, cleaning or I can just get some fresh air. I feel safe knowing that before each visit, Play and Care Worker Sukaynah has taken a COVID test and changes into full PPE as soon as she arrives, in order to ensure the safety of my son Murshid and the family. Murshid is able to interact and bond with his two siblings over activities, during Hospice at Home visits which is brilliant, and you can tell that his mood improves after every visit. Richard House have bought happiness to us as parents, as a family and to others also.
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Support from a Freemason It’s never fun to think about our own mortality, yet one third of adults in the UK die every year without having made a will – known as dying intestate. If you die intestate, a set of inflexible rules dictates how your estate will be distributed and to whom. You’ve worked so hard during your life to attain the savings, property and belongings that represent your personal wealth – why would you not want to decide who gets what after you’re gone? Under intestacy rules, any unmarried partners or stepchildren are ignored, regardless of how loving or long the relationship may have been. Even if you plan to leave everything to your spouse, without a will, your loved one becomes responsible for attaining ‘grants of letters of administration’ via the probate registry, which involves an interview and a great deal of bureaucratic form-filling. Not only will this process delay the release of funds, it is also likely to place added strain on your loved one. It might also be useful to know that if you leave at least 10 per cent of your taxable estate to charity, you could reduce any inheritance tax liability against your estate, but you can’t leave a gift to charity without a will. Mark*, a Freemason, recently decided to leave a gift to Richard House Children’s Hospice in his will after learning first-hand the life-changing difference the charity can make for those facing difficulty.
‘Richard House has been a comforting support for many children and their families. I owe a lot to my brethren for their guidance and endless support during periods of difficulty. I have been a Freemason for a number of years, and the impact that my own lodge has had on the lives of seriously ill children across London meant I personally wanted to give back in any way I could. I decided to leave a legacy to Richard House, *name has been changed for anonymity.
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to show my children that there are more important things in life than our own wants and needs – helping to provide stability for disadvantaged or vulnerable members of society is one of them. My advice to those considering leaving a legacy to Richard House is to make sure your family will be provided for first, then think of how you could benefit the lives of those less fortunate than yourselves, both now and in the future. Leaving a gift to Richard House can help support families long into the future, adapting to any new challenges that they may face. You'll help create a future that's kinder to some of the most vulnerable in society.’ If you are interested in using the free Will writing service please call 020 7511 0222, email fundraising@richardhouse.org.uk or visit richardhouse.org.uk/support-us/legacy
29 Chapters chose us! Mark Masons Benevolent Fund London Tom Quinn, Provincial Grand Master, invited two representatives from Richard House as his guests to The Mark Province of London's Annual Banquet in order to present a cheque for £30,000. Members across London and Middlesex voted for Richard House to receive a slice of a £1.25 million raised and distributed to hospices across England and Wales in memory of HRH Prince Philip the Duke of Edinburgh. We would like to pass on our sincere thanks for the invitation to attend the Mark Mason London Provence banquet to accept this cheque. It’s because of people like you choosing to nominate us at your meetings, because of organisations like Freemasonry choosing to support us, that we have managed to survive the last 18 months.
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Although national restrictions have lifted, Richard House still faces an uncertain future. We now believe that this year may be more of a struggle for raising funds than last, with emergency funding grants and government COVID support no longer available. So, when you look back on this donation, don’t think of your support as just a cheque …. Think of it as helping a father get a good night’s sleep. Think of it as giving a mother the confidence to look after her child. And, most importantly, think of it as helping a vulnerable child and their family enjoy what time they have left. It was an honour to be in attendance to thank you all in person. When COVID allows, I look forward to welcoming you to Richard House to meet some of the wonderful families and nurses that you’ve helped first hand.
Giving families the opportunity to recharge 7 year old Jaida Offorjinda has been coming to Richard House for two years. She suffers from congenital malformation syndrome a birth defect resulting in disabilities and CHARGE syndrome (Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and development, and Ear abnormalities and deafness), a genetic disorder. Here’s what her mum Olivia, had to say: We joined Richard House two years ago and the lockdown hit soon after and so we were able to access remote, music therapy for 10 weeks. This involved half an hour session on a weekly basis. Music therapy really helped Jaida and the family as at the beginning of the pandemic we felt that there was no plans or consideration from the government to help children with complex health needs. We were just advised to shield and that was as far as the advice went. Music therapy meant that my daughter had something to look forward to every week and it lifted our spirits as a family. Loneliness and isolation affects families/careers of children with life-limited illnesses as it is often felt that there is no support available, but Richard House offers the support we need. Just to have someone there who understands is so beneficial for your wellbeing. Loneliness has often caused the wellbeing of families who have children with complex health needs, to deteriorate. The pandemic was a good example of the lack of awareness surrounding families who have children or members with complex health needs. We felt forgotten, the only advice we were given by professionals was to just shield and there was no
Did you know? For every £4 Richard House Children’s Hospice needs to spend on its vital services, £3 must come from donations and fundraising. Page 12 8 Page
further information about what support was out there, we just felt shut off from the world and was trying to do the homework ourselves. Consideration from the government wasn’t taken with regards to how we would be feeling, it was all a bit the unknown at the beginning of the pandemic, no one knew what life would be like. We came across Richard House and the National Deaf Children’s Society and decided to see what support was out there and available. It was these charities that kept reaching out to us. For us, Richard House offered weekly music therapy sessions for my daughter and, family events and arts and crafts via zoom. This including remote music therapy sessions made us feel part of the world again. There is no typical day of care with my daughter, but it is never a case of waking up in the morning and going with the flow, we always plan our days. During the first lockdown in 2020 she had a tracheostomy which required continuous
suctioning, and I was working from home at the time also. On a bad day she may require 10 suctions an hour, on a good day it may be 2 or three. You spend a lot of time suctioning, cleaning the tube, factoring lunch and snacks, it can be quite full on at times. On top of that, she needs medication and supervision involving following her going up and down the stairs to make sure she is safe. On top of this we needed to monitor her tracheostomy to ensure it didn’t become dislodged and to prevent decannulation. Music therapy is something my daughter enjoys and she got use to seeing someone on the end of the screen each week. It really did cheer us up and knowing that she was doing something she was enjoying. Through it, she was able to communicate and express herself. The care we receive from Richard House is the best thing about the hospice, just knowing someone cares and wants to help. The staff are amazing, from the first visit we were made to feel very welcome. Olivia, Jaida’s Mum
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It was like we died… Precious and James tell their story No parent wants to imagine losing their child, but for families who use the services of Richard House, this can sometimes be the painful reality of having a child with a life-limiting condition. For Precious and James Rodbourne that reality came far too soon – Precious went into her 20week pregnancy scan excited to find out the baby's gender but instead was told that her son was suffering with a rare chromosomal abnormality and was unlikely to survive long after birth.
“It was like we died a little bit that day” Precious says, as she was given the choice to terminate the pregnancy – but eventually the couple decided to have their baby. Raphael Rodbourne was born at the London Hospital and died in his mother's arms at just 10 minutes old. Before Raphael was born the Rodbournes were introduced to Richard House in order to prepare physically and emotionally for what was to come and moved into the hospice for a week after Raphael’s birth; the five of them lived in one of our family flats, while Raphael’s body was kept in the Rainbow Room, so they could spend as much time with him as they needed. During that time, Percious and James played music to Raphael 24 hours a day, James putting on heavy metal and Precious choosing Celine Dion. Their two eldest children, Keli and Sefofo, understood what had happened to their brother, but it took the youngest, Eddie, more time. Precious remembers how he asked her, “Mummy, why is it the baby doesn’t look like he’s breathing?” The Rainbow Suite (right) gave Precious and James the chance to spend time with their son, but it was the bereavement support from the Richard House counsellor that enabled them to start coming to terms with their loss as a family and for the children to understand the reality of it.
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Andy Johnson, Volunteer Collection Tin Coordinator
Our current bereavement therapist, Alicia told us why this is a vital aspect of the grieving process
“Grief is unique and personal – it is really important that a family has an opportunity to express their loss whichever way is best for them, both individually and together. An important aspect of grief is finding ways to continue to feel connected with the person who has died.” For Precious and James, Richard House feels like Raphael’s home, because “we never took him to ours.” The family were able to feel at home with Raphael at Richard House and personalise his room, the children could play in the garden creating some positive memories and connections. In the garden, his name is engraved onto a stone alongside those of other children who have died at the hospice, while a memory book contains messages of love from his siblings. No family should lose a child, but if they do, Richard House can be there to help them through the darkest period of their lives. Support Richard House so that our all our families can receive bereavement support during the hardest time.
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An evening with Richard House… Freemasons from across London and Essex joined Richard House for a virtual update!
charity work not just in the form of money, but also members giving their time and their skills.
Charity is at the heart of Freemasonry, and this was displayed when Freemasons from across London and Essex joined a virtual presentation by members of the Richard House Children's Hospice team that explored the impact of their support for the hospice throughout the pandemic.
Earlier in 2020, the Freemasons sourced and delivered vital PPE, providing a lifeline for the hospice during some of the darkest days of the pandemic. During the evening, guests were updated by members of the Richard House team who have been on the ground throughout the last year - giving a real insight to the challenges faced and overcome.
Chris Williams, Head of Community & Events, opened the evening by describing how Masonic contributions have enabled practical support for the Richard House community throughout the pandemic. He gave an example of Freemasonry in the community, talking about the continuing successful work of the Mark Masons, Masonic Charitable Foundation and the many Lodges and Chapters who support Richard House. Whilst, funds are usually raised at meetings or through specially organised events, Covid-19 didn’t dampen spirits with Freemasons’
Modupe Banks, Senior Outreach Palliative Care nurse, talked about some of the ways she and her team responded to the challenge. Modupe went on to explain that the team were all working together to make a safe and happy environment, ensuring we were there for each other, with small gestures such as making a cuppa, lending an ear to someone who needs to voice their worries or by offering lifts to staff members who rely on public transport. Trish McInerney, Volunteers Coordinator, also shared insights into the work being done on site despite many obstacles. She emphasised the generosity of Richard House’s supporters and how, even during the toughest times, the team are uplifted by the knowledge that so many in the community are willing to give their time and financial support to make sure the hospice can continue to deliver the care and support so many families depend on.
Thank you to all who attended our first Friends of the Freemasons event. Richard House is committed to continuing “Richard House had an its collaboration with the important role supporting Masonic community to create a the NHS during the last 12 lasting legacy.
months - taking on children with long-term conditions from hospital wards, so that we could free up hospital beds for people who need critical care.”
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We are extremely grateful to have such strong support through what has been one of our toughest times. The generosity has meant we can keep on providing the best possible care to life-limited children in the community.
Keep your eyes peeled for our next – Coming April 2022!
Support in 2021 Freemason support has ensured our vital work has continued throughout the pandemic enabling us to achieve some incredible milestones. With special thanks to*… Mark Masons Benevolent Fund London Mark Provincial Grand Lodge Middlesex Mark Provincial Grand Lodge St. John's Lodge no.167 Granite Chapter no.1328 Guildhall School Of Music Chapter no.2454 Loyal Duchess of Kent Lodge no.3963 Earl of Zetland Chapter no.1364 Mill Hill Mark Lodge no.883 Star Mark Lodge no.499 Old Kent Mark Lodge no.9004 Khalsa Mark Lodge no.2022 Aegean Mark Lodge no.1978 Highgate Mark Lodge no.1909 Provincial Grand Stewards Lodge no.1870 Orchestral Mark Lodge no.1534 Semper Fidelis Mark Lodge no.1473 Woodard Mark Lodge no.1265 Halcyon Mark Lodge no.1118 Isma Mark Lodge no.996 Johann Gutenberg Mark Lodge no.976 Meridian Mark Lodge no.936 Pruedence & Verity Mark Lodge no.932 Irenic Mark Lodge no.899 King Solomon's Quarries Mark Lodge no.828 FitzRoy Mark Lodge no.815 Sanitarian Mark Lodge no.786 Imperial Mark Lodge no.643 United Service Mark Lodge no.489 Tuscan Mark Lodge no.454 Camden Mark Lodge no.418 Ubique Mark Lodge no.411 Egerton of Tatton Mark Lodge no.400 Ruspini Mark Lodge no.363 Henniker Mark Lodge no.315 The Macdonald Mark Lodge no.104 Lodge of Hope no.7152 Borough of Newham Lodge no.8627 Rupert Patterson Lodge no.3646 City Guilds Chapter no.4256 Wanstead Chapter no.3524 Clerkenwell Lodge of Installed Masters no.9628 Crest of Mount Edgcumbe Lodge no.7431 United Mariners Lodge no.30 Australia Chapter St Mark's College Lodge no.2157 Guildhall School of Music Chapter no.2454
270+ families supported through Masonic funding
47 Lodges supported Richard House in 2021 The Masonic Charitable Foundation funded 15+ hours of care
Over £44,000 raised from the Masonic Community
27 Lodges supported Richard House for the first time
113 freemasons received the ‘Friends
of the Freemasons’ mailing
300+ pieces of PPE provided by the Masonic Community
11 talks given to the Masonic Community (via Zoom) *at time of printing.
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Request a speaker Would your lodge benefit from an interesting and uplifting talk? Our speakers and awareness volunteers are a great way to inspire the community about the work of Richard House. We have a team of trained volunteers throughout Newham, Tower Hamlets and the surrounding London Boroughs who carry out talks to groups both large and small (from a minimum of five people up to 100) and give you the information you need to know about Richard House. We know that talks can truly make a difference! These interactive talks can last anywhere from 15 minutes to an hour (depending on how many questions you might want to ask). And if you've only 5 minutes free, that's not a problem - we can still give you the five things you should know. We've given talks in the workplace, social clubs, faith groups, community centres and even football stadiums. Basically if there's a place where your group meets up then we'll be there! We can even host a talk over Zoom or video call! “Richard House’s talk and presentation made such an impact on our members that I encourage others to invite them to speak.” Pauline, St Chad’s Church
The support that Richard House provides is right here in the East End community I come from. It’s great seeing the happiness of children and families from diverse backgrounds taking part in the activities provided. Steve Howey, Richard House Volunteer Ambassador
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Call us on 020 7511 0222 or email fundraising@richardhouse.org.uk to book your speaker today!
Get involved Raise awareness in your local area There are a number of brethren already working to raise awareness in and beyond their provinces. Join them by helping to raise awareness about Richard House in one of the following ways: Make a donation Book a speaker to talk at your lodge. Raise a Glass in your local Organise a Charity Golf Day Nominate us as a charity Dedicate an event to raise funds and awareness • Order a box of our pin badges for your lodge meetings • Share your own story with us, and help inspire others • Place an advert for Richard House in your regional publications • • • • • •
The Relief Chest Scheme The Relief Chest Scheme allows lodges, chapters, provinces and other masonic groups to save time, take control and give more to the charities they support. Purpose-built for freemasonry, the Relief Chest Scheme offers donor advised funds called Relief Chests within which donations can be securely held until you are ready to make a payment to a registered charity. Today, there are 4,840 Relief Chests holding funds. Think about your local children’s hospice, the next time you apply!
We have a real affinity with the hospice and we do it because we really believe in them. We’re all family people with children, and you never know what’s round the corner in life! Newham Lodge
Sign up to out e-newsletter! Sign up to our bi-monthly Friends of the Freemasons e-newsletter packed full of articles, news and stories of how the masonic community are helping our vital work. Simply email fundraising@richardhouse.org.uk. Page 19
Have your say! Our community is at the heart of everything Richard House does as a charity. It’s the community’s needs, views and feedback that guide us to do better, year after year. We are extremely grateful to our supporters for allowing us to share their inspiring stories. We hope their enthusiasm and efforts will inspire you to get involved too. If you have something to share with Friends of the Freemasons then we would love to hear from you! Email us your stories, comments, and letters to fundraising@richardhouse.org.uk or post to Richard House Children’s Hospice, Richard House Drive, London, E16 3RG - and please remember to include images if possible as these will bring your contribution to life!
At Richard House, as a member of the National Free Wills Network we are able to offer you the opportunity to have a simple Will written by a local solicitor FREE of charge. If you are interested in using the Free Will Writing service please call 020 7511 0222, email fundraising@richardhouse.org.uk or visit richardhouse.org.uk/support-us/legacy/ We will then pass your details on to the National Free Wills Network, who will send you details of participating local solicitors that can write you a free simple Will. Simply choose the most convenient solicitor and make an appointment by the deadline given in the letter.
Richard House is a place close to our hearts and we will never forget the kindness they showed us.
Whilst there is no obligation to leave a bequest to Richard House, we hope you will consider leaving a gift to help care for future generations of children with life-limiting illnesses.
Parent of a service user
fundraising@richardhouse.org.uk
020 7540 0223
Richard House Drive, London, E16 3RG | Tel: 020 7511 0222 | www.richardhouse.org.uk. Richard House Trust is a registered charity (1059029) and a company limited by guarantee (3232837 - England & Wales). Its registered office is Richard House Children's Hospice, Richard House Drive, London E16 3RG.
