We have used this post to take a break and give a shout out to some of the organisations we've discovered throughout the year between hospitals and treatments. Mason has spent most of the year in Noah's Ark where the team and play specialist have been fantastic. It was here we met LATCH who have supported us since, through various stages. A gift card from the Children’s leukaemia society & a duck from Give a duck foundation were provided upon Mason's initial visit to help with his introduction. Masons diagnosis was finally concluded by GOSH, following the eight-week discussion with the multidisciplinary team (MDT). Cost of Cancer has supported 'Team Dwards' as our schedule became increasingly busier through his treatment stages, and we are currently writing this from NHS Christie waiting room where he is undergoing proton radiotherapy.
Noah's Ark
The Noah's Ark Children's Hospital for Wales (Welsh: Ysbyty Arch Noa Plant Cymru) is a children's hospital in Cardiff, Wales. It is situated on the site of the University Hospital of Wales in the Heath area of the city and is managed by the Cardiff and Vale University Health Board.
The hospital play specialist team use a variety of therapeutic tools to help children overcome any fears or concerns about their treatments.
The team works closely with the rest of the multi-disciplinary team to help patients and their families cope with the following:
• To prepare children for hospital procedures • To help children cope with anxieties and feelings • To organise play and art activities at children’s bedsides or in the playroom • To contribute to clinical assessments based on observations during play routines • To encourage peer group friendships to develop • To help organise special events and parties for both patients and visitors
LATCH
LATCH supports the children and their families who are being treated by the Oncology Unit at the Children’s Hospital of Wales, whose catchment area stretches from Chepstow in the South to Aberystwyth in the North. Around 70 new cases are diagnosed every year. LATCH provides vital Social Work Service, financial support through Grants, emotional support for parents, holiday grants & excursions to provide a touch of normality for patients to escape from ongoing treatment (along with much more). Putting it simply, LATCH makes life easier for children and their families so that they can give their all to their treatment without letting anything else get in their way. Time and time again, families stress that LATCH lifted them when they needed it the most and in many cases stopped them from buckling. It’s only thanks to individuals and organisations up and down the country that these services have helped, and continue to help, countless families across Wales when they are most in need.
LATCH needs to raise on average £700,000 a year to cover the costs of supporting families. With no paid fundraisers, we rely heavily on the hard work of volunteers and remain proud to have one of the lowest management expenses for a charity in the whole of the UK. Over £300,000 was awarded to families in the form of financial grants last year alone.
Children’s leukaemia society
Our charity was established in February 1992 and support children who suffer from leukaemia and other childhood cancers. It's a small but essential charity that covers all of Wales and is completely run by volunteers and unpaid staff. During treatment, we provide a 'cheer up' gift which the children can choose themselves as we send them an Argos gift card. Once the treatment is over, we offer the whole family a holiday in one of our holiday homes at Kiln Park, Tenby; this includes an all amenities package.
Give a duck foundation
The Give A Duck Foundation is a children’s cancer charity, supporting local children who have been diagnosed with cancer throughout the UK.
Developed in the US by Lu Sipos for her son Gabe when he was diagnosed with cancer, Chemo Duck offers comfort and support to children from the start of their journey. Chemo Duck is fitted with medical lines and ports to mirror those of the child. Play Leaders, through play therapy, use Chemo Duck to prepare children for their treatment, be it an appointment with their Consultant, administering chemotherapy or taking blood samples.
Children feel they can take back some control at a time when they have very little, for example by suggesting that nurses clean the Duck’s Hickman Line or Portacath before their own. Things are less scary if Chemo Duck experiences the treatment the children will go through and provides a relaxed way to have discussions about what will happen to them in the hospital.
NHS - GOSH
Every day, 619 children and young people from across the UK arrive at GOSH. Every day, doctors and nurses battle the most complex illnesses, and the brightest minds come together to achieve pioneering medical breakthroughs. And every day is a chance for you to make a difference.
This extraordinary hospital has always depended on charitable support to give seriously ill children the best chance to fulfil their potential. A better future for seriously ill children starts here.
They support research that focuses on taking discoveries from the lab bench to the patients' bedside – known as translational research. They support the delivery of personalised medicine – being able to tailor treatment to each child based on the genetic characteristics of their condition. They want to see an overall improvement in survival rates and quality of life for children with rare and complex conditions. Much of their funding will go towards six priority areas that represent the strengths of the hospital and the UCL Great Ormond Street Institute of Child Health (ICH), and the particular opportunities that the demographic of the patients that come to GOSH provide are, birth defects and tailor-made transplants, cancer, heart conditions, hormone and cell function disorders, immune system disorders and muscle-wasting diseases.
Cost of cancer
Cost of Cancer Is a local charity operating from South Wales by Nicky Moss. They help families face the financial burden with hope, aiming to make sure they can concentrate on getting through the treatment whilst we take care of the bills.
Four in five cancer patients are hit with an average cost of £570 a month as a result of their illness, according to research by Macmillan Cancer Support. People living with cancer often have reduced earnings and need to find money to cover extra costs such as hospital travel costs and increased fuel bills, amid a gloomy economic climate.
One in three lose, on average, £860 a month in earnings because they are unable to work or have cut down their hours. Six in seven cancer patients see monthly expenses shoot up by £270 on average. The financial burden of cancer is not the same for everyone. Those in work, and those with children, are more likely to bear the cost of their illness. The impact for those on low incomes is twice that for those on the highest incomes. This is why at Cost of Cancer we want to help families face the financial burden with hope. We are aiming to make sure they can concentrate on getting through the treatment whilst we take care of the bills.
“We cannot make your hair grow back or even make the cancer go away but what we can do is make life a little bit easier.”
NHS Christie
We are the largest single-site cancer centre in Europe, treating more than 44,000 patients a year. We provide radiotherapy through one of the largest radiotherapy departments in the world, chemotherapy on-site and through 10 other hospitals, highly specialist surgery for complex and rare cancer, and a wide range of support and diagnostic services.
We are also an international leader in research, with world-first breakthroughs for over 100 years. We run a large, high quality, dedicated clinical research environment where our patients can participate in complex and early phase clinical trials, with around 400 trials taking place at any one time.
In December 2018, The Christie started treating patients in the first of only two high energy NHS proton beam therapy (PBT) centres in the UK. The other is being built at University College London Hospitals NHS Foundation Trust (UCLH) ready in 2020. We provide specialised treatment for UK patients with complex and hard-to-treat cancers who would otherwise be required to have this treatment abroad at centres in either Europe or in the USA.
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