High-Tech Homecare: A Patient’s Story

Myles Broughton is a HealthNet patient and is currently receiving High-Tech therapy for the genetic disorder Mucopolysaccharidosis Type 1 Hurler Scheie, which prevents his body from breaking down sugar proteins. Here he talks about his experiences of receiving treatment in his home and what it means for him.

“I started enzyme replacement therapy with Aldurazyme enzyme in January 2001, initially under a clinical trial by the Willink Biogenetics Unit at Pendlebury Children’s Hospital. I then started receiving the treatment at Pontefract General Hospital before becoming a homecare patient. HealthNet has been my homecare provider for the last two years.

I have a nurse who comes to the house once a week to deliver my infusion which takes around six hours. The medication has to be kept at between two and eight degrees and HealthNet uses a specialist cool bag to transport the medication which works well.

Because I have an allergic reaction to the treatment, I have to be looked after in a certain way. But one of the nurses who visits me has always looked after me and he always makes sure I am safe. I've always said that I need at least three or four nurses that are trained specifically around my own circumstances and that means if my regular nurse is on holiday there is someone to come to my home who is trained on my specific needs. My regular nurse has trained the other nurses on my own requirements and they are all really familiar with what I need.

When I initially started having treatment at the Willink Biogenetics Unit that wasn’t too bad because everyone that was there was having the same treatment and we all had the same understanding of what the treatment does. But when I was having treatment in a regular hospital that didn’t really work as I was around other patients having chemotherapy and because they didn’t understand my condition and my allergic reaction, they would ask for me to be moved.

When they first told me I would be getting my treatment at home under homecare I was a bit apprehensive, because on the wards you've got a lot of nurses and you've got a doctor. I am more confident now with HealthNet and one of the main reasons is that when I say something I know they are listening to me.

The main thing I like is the fact I don’t have to leave my home for treatment and I don’t have to travel. When I was going to Pontefract General Hospital in the beginning they would get me an ambulance but sometimes I would be waiting for around three hours to come home. So then I tried public transport but I would always start to feel a bit rough after my treatment on the way home so that wasn’t ideal either. Now I don’t have to worry about that. It has made things so much easier. I can just sit on my own sofa and pop what I want on the TV and watch that while I am having my treatment.

There is also more flexibility. At the moment I am waiting to have heart valve replacement surgery and I had to go all the way to Southampton for my assessment for that operation. But I still needed the enzyme treatment to keep me as healthy as possible. HealthNet was able to work around my appointment and put a treatment plan in place that meant I didn’t miss my therapy the week of that assessment. That flexibility is really important.

The other benefit of not having to go into hospital is that I am not at risk of catching an infection in hospital because I am immuno-suppressed. I am more likely to catch something else if I am going into hospital.

I think the main thing with homecare is you have nurses who listen to you as a patient. If the patient is telling you that something isn’t quite right or something doesn’t add up then it is important to listen to them. HealthNet really does that and I feel confident with them providing my treatment.”

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