Our Services:
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.
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.
The Millie Wright Children's Charity, which started supporting families on Ward L50, was been able to extend support onto Ward L42 in December 2022 and has more recently introduced support to Ward L52.
Families on Ward L41 are also welcome to help themselves to the provisions in the shared L41/L42 kitchen.
We aim to extend this further so that we can help families irrespective of where they are located across Leeds Children's Hospital.
Our 2023 plan is to provide two Mental Health and Wellbeing Family Support Workers to help families on the wards:
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These staff 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 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 important 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 be responsible for re-stocking 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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On-ward child centred support - we provide birthday boxes to children who spend their birthday in hospital. These are delivered on our behalf by the play leaders who make the day as special as it can be for the child. In the future we aim 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.
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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. An example in-action is being able to help a family to receive counselling earlier than would have been the case via a GP referral. 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 simple 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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Research into rare conditions - as a hands-on charity we so often we hear parents say, 'we don't know why this happened to us'. Having no answers is impossibly difficult to comprehend. Whilst the early months of charitable support are geared around essential short-term interventions and building relationships within the hospital, we are committed to looking more deeply at the topic of rare diseases. Working with hospital consultants, academics and families we will collectively raise the profile of rare diseases, with plans to build a database from which valuable insights can be learned - and projects funded to advance understanding and patient care.