We are often asked ‘WHAT DO YOU DO’ so thought I would give a little insight info into one of our typical visits. I hope you will take time to read and enjoy.
Our ‘community care programme’ http://naratbc.org.uk/community-care-programme/ is one of the most important and the largest part of our work, giving someone a piece of equipment is very easy and takes just a moment. However looking after that equipment and patient alike, working together with their Doctors, respiratory and community nurses to ultimately get the very best help and support for that patient is very much more financial and time consuming but very necessary. Medical equipment can only work to its full potential if it is looked after, therefore if the equipment is looked after the patient will be looked after too. Don’t forget all these people want to do is to be able to ‘breathe’.
1,100 miles covered, another very productive patient visit, one of our wider area trips covering a large area, meaning not so many people are met, but very necessary to our work, meeting and helping more patients and visiting Healthcare professionals through NARA’s community care programme. It has been fantastic to meet more new patients as well as those we have met before, more to add to our ever growing NARA family, it’s also good to be able to make new friends with all those we have been able to help. Not forgetting those who kindly support us. Very humbling!
The first part of our visit takes us from our base in Northampton to Sunderland to visit a Surgery and meet with with Respiratory nurses to donate some nebulisers and take a few pics. Onto another Surgery at Harraton, for another meet with community nurses with more nebulisers for them, and some more pics.
Very few surgeries have nebulisers, and where they do they do not have them available to loan out to their patients, so we felt the need to place some into surgeries that could be used both for their patients and for short term loan into the community until NARA could help the patients in the long term. Local fundraising can help with this see http://naratbc.org.uk/local-community-scheme/
On to Grangemouth to pay a visit to one of our ‘little patients’, a baby boy suffering from apnoea (stopping breathing). This baby needed a respiration monitor to alert his parents when he stopped breathing. He was only two and a half pounds born, and before he was a month old had had two operations, one on his heart. He is doing very well now, and I got a lovely cuddle from him, I love my work lol.
Like all other equipment the respiration monitors are no exception and need looking after. Body sensors, medical tape and batteries must be kept up to date so mum (dad or carer) is never without, and the machine must be kept in good repair, ideally a spare machine should always be available, these babies never let you know when they are going to stop breathing. It is also very important that arrangements are made for anyone taking care of baby to be taught resuscitation. Take a look at our Breathing Monitor Appeal http://naratbc.org.uk/breathing-monitor-appeal/
We left Grangemouth and on to our next stop at Pitlochry for our overnight stay at one of the Hotel groups that has given us a very generous donation to help our work in Scotland (one of which was the baby above). We met with the hotel manager to show him some of the equipment we had been able to purchase with their funding, and took a few pics.
From Pitlochry, we had the longest part of our trip, back down to Bradford. 6-7hrs travelling so an early start as we had appointments in the afternoon, traffic permitting. Our first appointment with another commumity nurse was cancelled due to him being busy with patients, so we went straight to see a wonderful young lady who suffers with multiple problems amongst which is a condition called brittle asthma, http://naratbc.org.uk/asthma-and-some-associated-conditions/ a particularly difficult and severe form of asthma which has put her into hospital many times during the past year on life support. H has recently received our first portable infusion pump. This is attached to her twenty four hours a day to delivers medication that helps keep her lungs working helping her to breathe. She had been off work for just over a year as she has been so poorly, but badly wanted to get her life back, and is thrilled to have just started a new job. She needed new nebulisers as her own were old and were not giving her the benefit she needed. Three new nebulisers were placed in the home, a mains powerful one in her bedroom, a portable/powerful one in living room, and a small portable one she can use to get her mobile. We hope once she gets better benefit from the nebulisers her health will improve and she can start to rebuild her life. Remember what Bob the builder said H – ‘can we do it? – yes we can’. It was such a pleasure to meet you H, you are an inspirational young woman, and we wish you well.
This infusion pump, like all other equipment needs looking after. Daily syringes and two to three weekly sets are needed to keep this running so H can get the medication she needs to help her breathe. These are not available on the NHS.
You may think three nebulisers is an excessive amount of equipment to put into one home, but this young ladies condition warrants the need for these. Many of the most powerful nebulisers are quite large, lifting could be a trigger in brittle asthma, hence one in the bedroom and one in sitting room to avoid carrying to different rooms. The portable is to give her the ability to lead an ‘as near a normal lifestyle’ the condition will allow a 22yr old to have. All this equipment again needs looking after, just one part of this means providing drive lines, medicine chambers masks/mouth piece and filters which need replacing at regular intervals.
On to Crosby Liverpool where we meet up once again with an amazing little man, 5yr old J. NARA has helped J – ‘our little boy’ with respiration monitors since he was eight weeks old. This little boy stops breathing for no apparent reason, and could do so up to six or seven times a day or night. Although Drs were aware he stopped breathing they were at a loss as to why, until recently, when they diagnosed him with a condition called Chairi Malformation. This is where the brain herniates into the spinal column because there is not enough room in the scull, causing many problems like headaches, eating disorders and apnoea to name but a very few symptoms. See our link on chairi http://naratbc.org.uk/apnoea-and-associated-condition-chairi-and-gor/
Very difficult to diagnose when so young, this condition may never have been diagnosed in J without the use of the respiration monitor, he may never have had that opertunity. J joined us to present a nebuliser to the Crosby surgery. From there, on to Moss Lane surgery at Bootle, for J to present them with their nebuliser too. These had been purchased with a very grateful donation from the Crosby Lions to help NARA’s work in the Liverpool area through our Local Community Scheme.
The last part of this trip, and a very important part of our story ‘Our Thank You’s’. We would not be able to continue the work we do without the wonderful support we receive from you all and we Thank You sincerely.
Still at the Surgery there was a lovely surprise for NARA when J also presented us with £260 which had been collected in the tins by staff and customers of McNaughton’s (J’s grandparents) Newsagents, Liverpool. A fantastic result.
Thank You so much to all involved on these visits, Doctors surgeries, community and respiratory nurses and receptionists, J and mum. It was lovely to be able to meet so many wonderful people, and it’s such a pleasure and honour to be able to help where we have. A really big Thank You to all at The Hotel Group, The Lions Club, all the staff and customers at McNaughtons Newsagents and all of you who make our work possible by donating in what ever way you have, every penny donated is very much appreciated, and your support enables us to be able to continue our work serving and helping those who struggle ‘to take a breath’. A massive Thank you to all.
This story is just about one long distance visit but I think shows you a little about ‘what we do’. We have many, many patients and our daily visits to an area could take us to as many as thirty patients, various doctors surgeries and chatting to respiratory or community nurses. We do like to spend bit of time with our patients too as in some cases we are the only people some of them see in a while.
If you can help our work in any way, or know of anyone we may be able to help please feel free to email us at firstname.lastname@example.org or call our office on 01604 494960. For more information on the work take a look at the rest of our website