Thanks to masonic funding, more WellChild Nurses like Rachel Gregory can help young people with exceptional health needs move from hospitals back into their homes, as Steven Short learns
Yesterday I travelled to deepest Lincolnshire for a home visit,’ says Rachel Gregory. ‘One of my children is starting school in September, so we had a final sign-off meeting to ensure everything is in place, and everyone is able to properly support his needs. We thought he might have to go to a special school – but he’s going to a mainstream school; it’s amazing.’
Rachel is a WellChild Nurse and her Lincolnshire child is one of around 100 under her team’s care. There are some 100,000 children and young people in the UK living with serious illness or exceptional health needs. Many of them spend months or even years in hospital because there is no support enabling them to leave.
The WellChild Nurse programme was established in 2006 to provide specialist support that makes it possible for children to be cared for at home. There are currently 32 WellChild Nurses across the UK. Employed by the NHS and funded by WellChild, these paediatric nurses help children and their families with issues such as ventilator-assisted breathing, physical and learning disabilities, tube-feeding, seizure management and chronic debilitating pain.
Rachel, a WellChild Long Term Ventilation Nurse Specialist, is based at Nottingham Children’s Hospital. Her role is part-funded by the Masonic Charitable Foundation (MCF), which has just awarded the charity a grant of £110,000 to fund a similar post in Derbyshire. Rachel, like her fellow WellChild Nurses, not only supports children with complex medical needs and potentially life-limiting conditions, but also provides support to their families.
The grant is the latest in a relationship between the charity and the MCF that spans almost two decades. ‘WellChild is a well-respected organisation, and there is clearly a demand for its services,’ says Les Hutchinson, Chief Operating Officer at the MCF.
Every year, the MCF gives more than £5 million to charities across England and Wales. Its latest grant to WellChild Nurses brings the total figure awarded to the charity to £240,000. ‘This is one of our larger grants, built on a relationship of trust and understanding, and seeing the impact of their work over a number of years,’ Les explains.
‘We wanted to fund provision in Derbyshire as there is a clear need. WellChild has already identified 90 children in the area in urgent need of support,’ he says. ‘Not only does this care-at-home model constitute a tremendous saving for the NHS, it also means that children are able to experience life as a child, to do things they would miss out on if they were in hospital – like going to school, sleeping in their own bedroom, going on family outings.’
Rachel, like the other WellChild Nurses, responds to the needs of individual children and their families. She will be involved in planning and coordinating a child’s transition from hospital to home – it’s estimated that 12 per cent of children in paediatric intensive care beds could be looked after at home were there enough support for them. She will ensure that necessary equipment, care and support are in place for the child and their family. Rachel is also able to provide practical respiratory nursing care at home.
Besides dealing with these practical issues, her job has an emotional element to it too: ‘My role can be very supportive. Some of the children’s medical needs are complex, and caring for them at home can be stressful for parents. Families are often under a considerable amount of pressure.’
While no two working days are the same, for Rachel, they always begin by checking her work phone for texts and emails. ‘I always have a look first thing to see if anything has occurred overnight,’ she says.
After seeing her own two children off to school, Rachel grabs breakfast on the run and usually arrives at work by 8.30am. ‘Some days I might be office-based, doing paperwork, writing reports and making phone calls,’ she says. ‘I might have a child coming in for review, and some days we have a multidisciplinary outpatient clinic, headed up by our consultant, during which we will see existing patients and meet newly diagnosed children and look at their needs and support.’
Those outpatient appointments number some 10,000 a year, according to Jo Watson, lead nurse for Derby Children’s Hospital, where the new WellChild Nurse will be based. ‘We manage inpatient and outpatient services here, as well as the children’s emergency department,’ says Jo. ‘Many children with complex needs don’t have a formal diagnosis and because of the way the NHS is currently funded, there is no defined care pathway for them… there are gaps in service.’
‘Not only does this care-at-home model constitute a saving for the NHS, it also means children are able to experience life as a child…’ Les Hutchinson
The funding of the WellChild Nurse will, says Jo, ‘allow us to provide better coordinated care for those children with numerous illnesses who need attention from different hospitals and healthcare professionals.’ Jo hopes that, as well as coordinating this care, the new WellChild Nurse will network with their peers to bring best practice back to Derbyshire. ‘The grant is about enhancing the quality of care we offer. It’s a leadership role.’
Along with being a bridge between families and the hospital and community teams, Rachel provides training for anyone who may need to help with a child’s care – from family members to school teachers to Brownie leaders. She also organises and conducts sleep studies in the child’s home overnight.
‘Breathing difficulties often happen at night, so we do sleep studies to make sure oxygen and carbon dioxide levels are where we want them to be,’ says Rachel. ‘We make sure ventilators are working, and if anything is wrong we make necessary changes, perhaps trying new forms of ventilation or new regimes. All of this can now be done at home, rather than necessitating a hospital stay.’
If no such study demands her attention, Rachel heads home. ‘Then it’s time for teenage homework – I change my hat as I walk through the door and turn back into a mum.’
Find out more at: www.wellchild.org.uk
Support for Sophie
One of the children supported by WellChild Nurse Rachel Gregory is 11-year-old Sophie. She and her twin sister Erica were born at 24 weeks and have cerebral palsy. Sophie’s condition is more severe than her sister’s and she has a number of conditions including epilepsy, chronic lung disease and scoliosis, which requires 24/7 care. Sophie is ventilated at home and her family attends to her many medical needs.
‘Rachel has been instrumental in keeping Sophie at home,’ says Leanne Cooper, mum to the twins and nine-year-old Kyla. ‘She is a constant support and the link between us and many of the healthcare professionals we deal with. She makes sure everything runs smoothly for Sophie, ensuring she is at the centre of all decision-making so she can live a full life.’
Leanne is a member of the parental advisory group that works with WellChild to help shape its strategy. She is also one of the parents who started the ‘#notanurse_but’ campaign, which aims to raise awareness of the level of medical care parents provide for their children at home.
‘Years ago, many of the children we work with would not have survived their conditions,’ says Rachel. ‘In the past 10 years, things have really changed and long-term ventilation at home is much more viable. Technology and medical decision-making have really advanced, meaning our children can now live full and fulfilling lives at home.’
Annual General Meeting of The Freemasons' Grand Charity
9 September 2015
The following individual non-masonic grants were approved:
a. £45,000 to Cure Parkinson’s Trust to fund research into targeting new treatment
b. £50,000 to Diabetes UK to fund the development of a Vaccine for Type 1 diabetes
c. £40,000 to Guy’s and St Thomas’ Charity to fund research into inflammatory bowel disease
d. £65,000 to Moorfields Eye Charity to fund research into age-related macular degeneration
e. £20,000 to Restore – Burn and Wound Research to fund research into skin allograft acceptance for burn injuries
f. £60,000 to UCL Cancer Institute Research Trust to fund research into the immunology of lung cancer
g. £32,000 to University of Leicester to fund research into the role of visual crowding in reading difficulty across the lifespan
h. £7,500 to Armonico Consort Ltd to fund workshops in Special Educational Needs Schools
i. £22,000 to Canterbury Cathedral Trust to fund an apprentice stonemason
j. £10,000 to Farms for City Children to fund a week on a farm in Devon for inner city children
k. £10,000 to Groundwork UK to fund three Green Teams across the UK
l. £25,000 to StreetGames to fund the ‘Us Girls’ Empowerment Project
m. £15,000 to AbilityNet to fund IT services for older disabled people
n. £20,000 to The Back-Up Trust to fund the salary of the Schools Inclusion Co-ordinator
o. £40,000 to British Lung Foundation to fund the Singing for Lung Health Programme
p. £47,750 to British Wireless for the Blind Fund to fund the replacement of old wireless internet audio players
q. £50,000 to Canine Partners to fund a residential building at the new training centre in Leicestershire
r. £30,000 to Carers Trust to fund the salary of the Policy and Development Manager
s. £15,000 to Jubilee Sailing Trust to fund the Buddy Bursary scheme
t. £25,000 to Listening Books to fund the expansion of the Books for Hospices mini-library service
u. £7,500 to The National Deaf Children’s Society to fund workshops helping deaf children and young people
v. £37,250 to National Star Foundation to fund specialist residential accommodation for people who have severe and complex disabilities
w. £20,000 to The Royal British Legion Poppy Factory to fund an employability consultant
x. £43,000 to Victim Support to fund a volunteer team for the helpline
y. £40,000 to WellChild to fund a Children’s Nurse
z. £5,000 to Blackburn Cathedral to fund the restoration of the Cloister Garth building
aa. £5,000 to St Davids Cathedral to contribute to the upgrade of the seating facilities at the Cathedral
bb. £10,000 to Winchester Cathedral Trust to contribute to the new Learning Development Centre
The following amounts were approved for disposal by the Council of the Grand Charity over the coming six months:
a. £1,261,000 for major non-masonic grants
b. £150,000 for non-masonic grants of £5,000 or less
c. £600,000 for grants to hospice services in 2015 (£500,000 for allocation to adult hospices and £100,000 to children’s hospices)
d. £192,000 for grants to air ambulance and similar rescue services in England, Wales and the Crown Dependencies in 2016
The following Emergency Grants made in the past nine months were reported by the President:
• £30,000 to the British Red Cross for relief work following flooding in the Balkans
• £20,000 to the British Red Cross for relief work following cyclone Pam which struck Vanuatu
• £50,000 to the British Red Cross for relief work following an earthquake in Nepal
Hands-on help in the garden
Every child loves to play outdoors, particularly during the summer. However, for seven-year-old William, who suffers from autism and asthma, this simple pleasure hasn’t always been possible
William also shows violent and destructive behaviour when he’s frustrated, and has no awareness of danger, often running away from his mother when he can.
To provide him with a safe outdoor space, a small team from the RMTGB recently participated in a scheme called Helping Hands, operated by the national charity WellChild. The team spent all day renovating William’s garden by installing new fencing and replacing the gravel with an artificial lawn.
Stepping stones to a new life
For the previous two years, WellChild has received grants from the RMTGB totalling £45,000 to support projects such as Helping Hands. Those participating were happy to have had the chance to become more closely involved with the project. A bake sale was also held at Freemasons’ Hall to raise the required funds.
Oliver Carrington, who manages the RMTGB’s Stepping Stones scheme, said, ‘Being able to meet one of the families we’re helping was really rewarding. I hope that William enjoys playing in his new garden.’
Since the scheme was first launched, more than £700,000 has been awarded to around forty non-masonic charities by the RMTGB’s Stepping Stones scheme, which has helped to improve the lives of thousands of children across England and Wales.
Child support network
Around one hundred Freemasons and family members from the Province of Bedfordshire attended the twenty-ninth Annual General Court and General Meeting of the Royal Masonic Trust for Girls and Boys on Saturday, 14 June.
The meeting took place at the Luton Masonic Centre and was chaired by Michael Sawyer, PGM for Bedfordshire, whose 2015 Festival in support of the Trust concludes next year. Those present heard from the President, Chief Executive and members of council and staff about the activities and achievements of Freemasonry’s oldest charity.
During 2013, the Trust supported over 2,000 children and young people from masonic families with more than £8.4 million in funding. Nearly 15,000 further children benefited from the Trust’s non-masonic grant-making scheme, Stepping Stones, which awarded £100,000 to local and national charities, and supported Lifelites (a charity for children in hospices). Michael said he looked forward to the successful end of his Festival appeal in 2015.
Making an impact
The RMTGB has given a grant to Helping Hands, which coordinates local volunteers to improve the quality of life for sick children
As part of its Stepping Stones scheme, the RMTGB awarded a £30,000 grant to Helping Hands, a scheme established by the charity WellChild in 2006 to provide practical support to severely sick children and their families. The children supported by the scheme have a range of conditions such as learning difficulties, mobility problems or visual or hearing impairments.
Many family homes are unsuitable or unsafe for children with such conditions. Four-year-old Mustafa was born with a diaphragmatic hernia, a hole in his heart, an underdeveloped lung and epilepsy. He needs twenty-four-hour oxygen therapy to help him breathe and has serious learning disabilities. He is constantly seeking sensory stimulation, but his garden had many trip hazards and it wasn’t safe for him to play outside with his family.
WellChild’s Helping Hands scheme aims to give sick children like Mustafa the opportunity of a better childhood by coordinating teams of local volunteers to carry out small home improvement projects. Mustafa’s garden was transformed in just one day as volunteers from a local business installed a new artificial lawn, a large play mirror, colourful murals, and a specialist swing and support seat. These small improvements will have a dramatic and lasting impact on Mustafa’s childhood and daily life.
The Helping Hands scheme relies on donations and volunteers giving their time. To lend your support, go to www.wellchild.org.uk