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Helen and Douglas House

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Helen & Douglas House care for children and young adults with life-shortening conditions, and support their families. Helen House opened in 1982 as the world’s first children’s hospice, followed by Douglas House in 2004 specifically for young adults aged 16-35.  The two hospice houses offer specialist symptom and pain management, medically-supported short breaks (respite) and end-of-life care, as well as counselling and practical support for the whole family. We hope to help every young person who visits us live life to the full, even when that life is short.

The incredible committee of volunteers who run the Whittlebury Fair have been very generous supporters and strong advocates for Helen & Douglas House since 2009. Every year they each give so much time to make the fair a “must do” event for stall-holders and visitors, in such a friendly and professional way. Over five years they have donated an amazing £60,518.37, which has made a significant difference to the lives of the children and young adults we care for.

To put this into context, this donation could have paid for two care team members for a year.  As well as being a place to care for our guests’ complex medical needs, the care team makes sure the hospice houses are places for these young people and their families to relax, socialise and have fun. We aim to provide spiritual and emotional care to our guests, and improve their quality of life as whole people.

Helen & Douglas House help many families like Ollies.  Ollie is 6-years-old and lives with his mum Marie, dad Mark and sister Shayla, aged 3. Ollie has grade 2 brain damage resulting in multiple and complex conditions including cerebral palsy, epilepsy, scoliosis, and visual impairment. Ollie also has development delay, learning difficulties and is tube fed.

He has been visiting Helen House since he was 16 months-old and currently stays for three nights, every four weeks. The number of nights and frequency of visits has been evaluated by the team on-going and increased as his needs have changed and his condition has become harder to stabilise. By having frequent visits to the hospice, Ollie’s condition and medication can be monitored and stabilised far more effectively.

Here is what Mum Marie says about Helen House :-

Coming to Helen House gives Ollie a break from me! He needs 24-hour care. Mark works full time. We get 16 hours-a- week of care support at home. My day starts at 4 in the morning and finishes at 11 at night. I get two hours sleep in an armchair next to him. I think to myself, ‘I’ve only got to do 4 weeks, between visits to Helen House. It is great to have something to get me through those weeks and long nights. 

 

I also get telephone support from Helen House and have a fantastic relationship with Dr Emily and Dr Laura. When Ollie comes in as emergency it doesn’t feel like an emergency. When you go to hospital everything is a panic.

Helen House see kids with complex needs all the time, so they have specialism. When other people don’t know what do with him, you know that Helen House will know what to do. Helen House HleenHelen House staff are my lifeline. I wouldn’t have got through the last year without them.

Marie explained what a difference having, not only Helen House to visit, but the skills and specialism of the Helen House team outside of the building, makes to the family. Karen Brombley Nurse Consultant and the Outreach Nurses make sure that a child like Ollie, with very complex needs, has ‘joined up’ care from other health care teams in the community at home, or in hospital.  

Karen Brombley has been a fantastic support at home. She has made sure that not just Ollie was okay, but the whole family; everyone. She was a great help putting things in place; planning so that everyone knew what we wanted to happen for Ollie as a family. Normally you have to repeat everything; it’s like a broken record. Everything was put in place. I could concentrate on Ollie.

I don’t stay with Ollie at Helen House, I come home. I have to have that complete separation. I would want to do everything, because I have always done it. I have a complete break. I have time with Shayla, because usually she gets left out because my time is with Ollie.

Everything in our house is about Ollie. We have hoists and a lift and special chairs. When he is at Helen House that all gets put aside, so she knows it is her time. It is difficult for a three-year-old. Shayla loves him, but you can see it sometimes, she has had to grow up very quickly. She knows how to use a suction pump and a feed pump. Ollie makes a noise when he stops breathing. She will go over and thump him on the chest and say, ‘breathe Ollie’. But everything is focused on her when Ollie is at Helen House.

Marie spoke about the things that Ollie does when he stays at Helen House;

Ollie has access to more things at Helen House and he is able to do more. He gets a huge amount from the spa. We don’t have the equipment at home for him to have a nice deep bath – and we can’t get in with him! In the spa he has physical contact, safety and warmth. It does him the world of good; it helps his breathing and it’s good for his muscles. He feels free and that makes a huge difference. Then he is typical little boy – he is more vocal. I can see that if he could he would sleep in there.

Ollie loves going to the sensory room, with the lights and the music in there. It’s the whole atmosphere. It calms him before bedtime – it brings him down naturally. He also loves the art room and having his hands put in paint. I love finding paint and glitter on his wheelchair when he gets home, because to me it shows he is a child and he is having fun.

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