Train and beach huts
Our trip starts on a happy note on route to Swindon to meet up with one of our long term patients. T has been a patient since the age of twelve when he was in a bad way with his Asthma. Living in the small village of Hinton St George in Somerset meant medical intervention was quite a distance away so when he had an asthma attack it could be life threatening for him. A nebuliser was put into place which saved him many trips to the hospital and I have been told saved his life on occasions over the years. His equipment had been replaced over the years, and indeed a new mains and a new portable nebuliser was provided just weeks before we arranged the trip. T is now in his thirties, and the lead singer in a tribute band. The beginning of our trip got of to a good start as the band just happened to have a show on the first day on our route to the south west. It was a fab evening watching T with the rest of his band – The Beach Boyz Tribute Band. It was really good to meet up after all these years, to see how far he had come and how he has managed to get himself a ‘great life’ despite his condition. After watching the show I asked T how he managed to sing and dance like he did with his condition, he said – ‘It has become part of my breathing exercises, practicing my singing helps me so much with regulating my breath, and the dancing just becomes part of it’. A great night out for anyone who likes Beach Boys Music. Take a look at the link http://www.beachboyztributeband.co.uk/ if you get the opportunity with them being your way, take it -they are great. This is a great success story for NARA too, knowing we have played some part in T reaching his goal and helping him lead as near normal a life as is possible with his condition is heartwarming, and makes what we do so worth while.
These stories are not about all the patients we see at one time. It is very difficult to plan a long trip like this, there are many factors that get in the way, traffic, car problems, timings and more importantly our patients have their own lives to be getting on with too, so we have to slot in where we can. Some could be in hospital, some at school and some working, many will allow you a visit, many will welcome a visit and some like their own space and just like to talk on the phone and we understand that. We have many patients in some areas, and some in others that are very spread out so you can imagine the difficulty planning to see who you need to at the right time, but we alway fit in who we can and we hope to see others on another visit. Two families that we had arranged to meet had to change their plans at the last minute so we couldn’t visit them that day but we have met with one of the families since and have another story about them another day. Other patients were visited in Purton, Highworth, and Swindon.
T – Hinton St George, and the Beach Boyz Tribute Band.
After leaving Swindon we start to travel on the road toward Weymouth, however after just an hour on the road we seem to have a problem with the car, turns out we have a large nail in the tyre which if we travel too much further will cause a huge problem so detour has to be taken to repair it. We were very lucky, if we had carried on it could have been a whole different story, so thank you to our guardian angel. Due to this we unfortunately had to miss out on seeing little I in Salisbury who had finished with the apnoea alarm but that has now been returned, and little I is doing very very well.
Back on route to Weymouth and much later than planed we call in at Blandford to a little boy who we had helped with a apnoea alarm. Little L was born very premature, he needed oxygen and suffered with apnoea of prematurity.
Apnoea of prematurity
is defined as cessation of breathing by a premature
infant that lasts for more than 20 seconds and/or is accompanied by hypoxia
. Apnoea is traditionally classified as either obstructive, central, or mixed
. Obstructive apnea may occur when the infant’s neck is hyperflexed or conversely, hyperextended. It may also occur due to low pharyngeal muscle tone or to inflammation of the soft tissues, which can block the flow of air though the pharynx and vocal cords. Central apnea occurs when there is a lack of respiratory effort. This may result from central nervous system immaturity, or from the effects of medications or illness. Many episodes of apnea of prematurity may start as either obstructive or central, but then involve elements of both, becoming mixed in nature.
L was now doing very well and mum had not used the monitor for a few months. We normally ask mums to keep hold of the equipment for a couple of months after they finish using it, just to make sure they no longer need it. We had arranged to pick up the monitor and it was really great to put a face to a name. L is such a gorgeous happy little boy and has come on in leaps and bounds. Although we were running late due to the events of the morning we still had time for a cuddle with L and some pictures. The monitor picked up and we are on our way to our next stop.
L – Blandford. Dorset.
On arrival at Weymouth a much needed stop for a cuppa and leg stretch was needed. As we are walking around we come across a shop raising funds for Julia’s House.
Julia’s house work in Dorset and Wiltshire and provide practical and emotional support for families caring for a child with a life-limiting or life-threatening condition.
Through our community care programme we have placed equipment with them to use for children who wanted to go home. Sometimes, parents with little ones with life limiting conditions need some rest-bite and Julia’s House is the type of place parents would choose to place their child for that, but when the child goes back home equipment is often needed.
Many with terminal illness wish to spend their last moments at home with loved ones, and again medical equipment is often required, a time to be able to have a cuddle with mum, dad or siblings at their last moments can be a great comfort for all. A time for all the family to say goodbye.
We had not been able to arrange a suitable visit with Julia’s House during the times we were in their area, but we called into the shop where we met some of the staff and arranged a invite to their new Hospice which is soon to be opened.
Julia’s House. Dorset
Today we have a bit of a mixed day, spending the day in Somerset. We have already spoken to you about T from Hinton St George, today we make a visit to see his wonderful grandma P. T was brought up with is grandma and indeed is still living there when home. She has always been our point of contact over the years, and is very proud of her grandson. It was a real pleasure to meet her and learn so much about T. She allowed us to take a pic of her, a wonderful lady.
From there we went Crewkerne, my home town. I could not go all that way and not go back home, many good memories.
Back to Weymouth to see another long term twenty five year old lady and replace equipment, we did know she was not going to be there but the equipment was left with mum. Another happy patient. More patients were contacted in Weymouth but for various reasons we could not visit so anything needed was dealt with over the phone or by post.
P – Hinton St George. Somerset.
Today we visit the Royal Devon and Exeter Hospital. We had arranged to see a paediatric community nurse J who works with children being discharged with respiratory conditions. They have their own mains nebulisers but wanted to know about portable ones. As a norm with children we try to use nebulisers as little as possible but in some cases they are a necessary evil. As a charity the whole objective is to give people a better quality of live with the condition they have, so portability is paramount in many cases. We had agreed we would give J some portable nebulisers she could give the children for use when they want and are able to go to school and also if they wanted to go on a holiday which for some people with breathing difficulties can be very difficult to arrange. We hope the equipment allows a quality of life we so often take for granted.
Royal Devon & Exeter Hospital.
From there we move on to Cornwall and our first visit is to a lovely gentleman in Saltash. We needed to replace his nebuliser with a new one and he was offered a portable which he accepted. This will give him the opportunity of being a bit more independent and hopefully give him a better quality of life with his condition. We had a lovely chat, and he allowed us a photo of him with his new nebuliser. We left him a happy gent and travelled on our way to the next patient.
Mr I W – Saltash.
Our patients in Somerset, Devon, Dorset and Cornwall are a bit spread out and some are not to close to their doctors surgery, so it is important that our patients have suitable equipment if any of the equipment breaks down. As far as we can, we place both mains and portable nebulisers into homes like this so there is always a spare machine.
Whilst we were in the area we identified more surgeries that are keen to be added to our proactive programme. This is where we place equipment with them for use in both the surgery and also can be dispatched quickly to a patient should the need arise. These will be dealt with as and when funds allow.
We hope you enjoy this story, please contact us if you need any more information, or if you can help us, or you know anyone that we can help.