Our Services:
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We recognise the huge strain and uncertainty arising from having a seriously ill child and work with the fabulous ward staff to help alleviate some of the challenges of being a long stay in-patient.
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As funding grows we will be able to roll out a wide range of support based on our own experience and what patients and their families have told us is most valuable.
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The Millie Wright Children's Charity began supporting families on Ward L50 in May 2022. Soon after it extended this support onto Ward L42 and in early 2023 onto Wards L52, L41 and PICU (Paediatric Intensive Care Unit). Support in the haematology clinics is planned in the near future.
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​We aim to be there for families irrespective of where they are located across Leeds Children's Hospital.
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Whether your needs are practical, emotional or financial, we hope to be able to offer some support be-it of a hands-on nature or by signposting or referral to other organisations and charities.
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We are advertising our first Mental Health and Wellbeing Family Support Worker to help families on the wards:
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This staff member will be qualified and trained to provide practical and emotional support to parents and carers - this could include anything from a friendly ‘good morning’ to helping process bad or difficult news.
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They will also be trained to help signpost families to other sources of assistance such as financial help and education, recognising the huge financial strain that families face when caring for a child in hospital.
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They will enable parents /carers to take a short break for something to eat and drink or just to take a bit of ‘time out’.
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They will be on-hand, along with the nursing and specialist play staff, to engage with your child, make you a drink or snack, lend toys, books or play equipment etc.
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If you need washing or shopping this can be arranged too! Importantly, they will to help you to maintain contact with friends, family, schools and other external organisations such as local authorities and healthcare providers.
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​An key part of their role will be to introduce themselves to new families on the ward and to answer questions about the ward and wider hospital site, with information on shops, parking etc. They will be on-hand to provide an ‘ever ready ear’ to listen to you and provide comfort at difficult times.
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From a practical perspective they will help you to look after your bed space and will re-stock the parents kitchen - including topping-up our provision of basics such as tea, coffee, crisps, biscuits and washing up liquid!
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The Family Support Worker will continue to support families even after they have left hospital and will give continuity on future visits or at clinics.
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The family expenses grant - we've introduced a small interim hardship payment which will evolve into a family expenses grant when funding permits. The family expenses grant is intended to recognise the unavoidable additional costs faced when in hospital caring for a child with a life threatening condition. Where a child has been an in-patient for a continuous period of 21 days, and upon receiving a qualifying application, we will make payment directly to the family to help reduce the financial impact. This support remains subject to funding and is under regular review.
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This grant is in addition to helping families apply for and access other potential sources of financial support. Our experience helps us to signpost families to access wider financial help.
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On-ward child centred support - we provide birthday boxes to children who spend their birthday in hospital or who are attending hospital for dialysis. These are delivered on our behalf by the play leaders who make the day as special as it can be for the child. We also help to fund play therapy, art therapy, music therapy, holistic therapy, toys and electronic resources, art and craft materials etc. to make the environment feel more child-friendly and welcoming. We recognise the fabulous work that the play team do and want to give access to even more resources. When funding permits, we want to provide technology to enable children take part in school classes and remain engaged with their peers. We recently secured grant funding to fund weekend play to make the weekends feel more 'normal' for our younger children.
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We also recognise the importance of the hospital Youth Work team who support young people to navigate their educational, social and wellbeing needs as they adapt to having a long term health condition. Importantly they also give young people a voice.
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Signposting to other organisations who can help - we recognise that being in hospital in unfamiliar surroundings at a worrying time makes it difficult to focus on identifying those who can help. We’ve done some research for you to identify prospective organisations and their contact details. If you like, we can help complete forms or make a referral for you. This may include identifying potential sources of financial support, food banks or counselling. For example, we are proud to have been able to help a family to access bereavement counselling earlier than would have been the case via a GP referral. We were also successful in signposting another family to a local charity who provided them with financial assistance. If you think we can help, please get in touch.
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Education and SEN Support/Guidance - having a life threatening illness and/or a transplant is lonely and isolating for many. We are here to support and advocate in conversations with schools and with local authorities around identifying the best ways to ensure your child feels included and connected in the school community.
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Snacks, drinks and toiletry products - we know that being on the ward makes it very difficult (and expensive) to leave your child to access the few local shops offering food and drinks. We provide a selection of essentials in the parents' kitchen - so help yourselves. We try to include fruit, tea, coffee, crisps, biscuits, soup, porridge, pasta meals, rice meals, cereals, etc. If there's anything you would like us to add to meet your dietary requirements, or if supplies need re-stocking and we haven't noticed, then contact us! Every Saturday we deliver hot food to parents under our Saturday Supper initiative, funded by local companies and generous individuals. To keep this as inclusive as possible we have a regular order with Pizza Hut who deliver hot pizza to meet most needs. Pizza Hut advise that their margarita pizza is halal and we can cater for dietary requirements such as vegan and gluten-free on request. Ward staff will ask which parents want to receive food during Saturday afternoon for delivery around 7.15 pm.
In addition, we recognise that you probably won't have packed everything, or indeed anything prior to arriving on the ward so we provide toothbrushes, toothpaste, shower gel, shampoo, sanitary towels, some socks and underwear etc for you. Ask the ward staff to show you where our trays are kept in the linen cupboard... help yourself.
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Inspiring the next generation / research into rare conditions - as a hands-on charity we so often hear parents say, 'we don't know why this happened to us'. Having no answers is impossibly difficult to comprehend. Research into finding answers, understanding conditions, developing new treatments and patient care is complex and expensive. As a small charity, we are looking to contribute to 'the bigger picture' by a two-phased approach.
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Under Phase 1 we are engaging and inspiring students and entrants into the medical profession, providing networking sessions for them to meet with medics and academics to find out more about research into rare diseases and conditions. Key to this is raising awareness of the inequality in funding that these types of condition attract.
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Under Phase 2 we will build relationships between medical students, consultants, academics and families, at a national level, to develop new or support existing focused projects centred upon advancing the understanding of rare diseases and conditions.