‘The NHS saved my life when I was a baby ... and it’s still doing it'

THE NHS saved my life from the very beginning. I was born three months premature and it’s thanks to them I’m still here. And now I rely on them because of my ALD.

It took about five years of testing to get a diagnosis. I was constantly in hospital. You feel as though you’re part of the big picture of the NHS. It’s thanks to their patience that I found out what was wrong. At first they came back and said I had MS, and I was actually happy to be able to say “that’s it”, but then it turned out that wasn’t the case.

When you’re told you’ve got something that’s incurable and degenerative, there are mixed emotions.

I am sorry to say this rare brain condition kills boys and men and was the subject of an American drama film in the early 90s, called Lorenzo’s Oil, with Nick Nolte and Susan Sarandon. I have late-onset ALD, although it has been with me since my birth. It is passed from mother to son and father to daughter.

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My mother was soon tested and was found to have been the carrier to myself through her X-chromosome and unfortunately I have passed it so my daughter, Rachael, who is now 28. My son is unaffected.

My father, Alexander died in 2002 with Motor Neurone Disease. I remember taking him up to the hospital for his lumbar puncture before he was diagnosed, then all these years later it was me going for mine. I went for brain scans, loads of tests.

I am still working and trying to be as optimistic and cheerful as possible. I am a principal estimator in naval shipbuilding where the latest batch of frigates are being built for the Royal Navy in Scotland.

My motto for life is ‘every day is like Christmas Day’ and I try to appreciate everything I have. I am lucky to have my employer, BAE Systems Naval Ships, and all credit goes to them for sticking by me.

Some of the challenges are with my balance, chronic fatigue and memory, concentration and speed of processing. I do try and remain cheerful and having two grandchildren, David and Olivia, helps that.

I’ve got to take my hat off to the NHS. Some people complain about it, but that tends to be the ones that don’t have much contact with it

The most problematic element is balance – I have a stick for walking. The second is fatigue – I’m shattered all the time. I started fatigue management through the NHS and that has been a godsend.

I see occupational therapists, a neurologist and a clinical psychiatrist to help with different symptoms. I’ve seen a genetic specialist, endocrinologists and speech and language therapists and I’ve been to orthotics for help with walking.

One of the problems with ALD is shuffling. I scuff my feet and I’ll wear out a pair of shoes in a month. I’ve also been to the physically disabled rehabilitation unit at hospital.

I’ve got to take my hat off to the NHS. Some people complain about it, but that tends to be the ones that don’t have much contact with it.

I’ve never really had that mindset because it doesn’t help anything. I could complain all day long and it wouldn’t change anything. My mindset is probably a blessing when you’ve got an incurable condition.

I’ve had a lot of support from a charity, Alex TLC. They’ve listened to me and they have events where you can meet other people who have ALD.

It’s a sad event in a way, but it’s also good to meet other people who are the same as you, who understand where you’re coming from.

They also helped me make adaptations to my house, because I can’t be going up and down the stairs all the time. I’ve also been given a new office at work that’s on the ground floor, which is brilliant.

I’ve got a parking space and I can drive right in and walk the few steps it takes and I am so lucky with my employer that they’ve done this for me. I’ve been there 18 years and I’ve seen their occupational therapist too – they gave me acupuncture, mindfulness, physio and ongoing advice.

I’m also lucky with my wife Carol Anne – we’ve just celebrated 30 years of marriage.

I think about what I’d do without the NHS all the time. I’d be stuck high and dry. The NHS is there for us all.

TRISHA MURPHY (37). Assistant patient catering manager at Queen Elizabeth University Hospital, Glasgow.

I STARTED off as a chef in the NHS in August 2001 and worked my way up to team leader. When the new hospital opened in 2015 I ended up as a supervisor, then was promoted last year to assistant manager.

Our job is to ensure patients are getting fed good quality food and that everything is going out correctly. The job can be challenging. You have got to ensure that patients are getting the correct dinner. You might have patients with multiple allergies so it is not just a simple case of giving them what they like.

We cater for the elderly at the Langlands Building and the kids’ hospital as well so it is challenging to ensure you are feeding everybody and everybody likes what is going out to them.

I never thought I would be here all this time

At the moment we are feeding roughly 1500 people. We have 22 kitchens and four members of staff in each one so it is a big operation.

When I came in as a chef all those years ago I never thought that I would be sitting where I am sitting now. I do enjoy the work. I enjoy the challenges of it and I think everybody does a great job.

You are there to see the patients are better so it is good to see that. I never thought I would be here all this time but it’s positive working for the NHS and it is a stable job.

When you come in as a worker to the NHS you don’t expect something like the coronavirus to happen but you are here and you have got to work through it. I was not really worried for myself but we had to ensure the staff had their PPE and understood what they needed to do.

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I think some staff were worried about it because there were areas with full PPE but they went and did it and we didn’t have any gripes or anything like that which was really good.

At the end of the day you are here for the patients and I do think people maybe now understand more about what happens in a hospital.

You have your doctors and nurses that are frontline but I don’t think people sometimes realise that you have also got your caterers, domestic staff and portering staff that are doing a great job, especially at this hard time.

You just think it is the doctors and nurses that are doing it all but you don’t think about how rooms get cleaned and how the patients get fed and how they get there.

All the wee videos and things that’s have come out of this have highlighted what happens in a hospital which I think is positive.

The clap for the NHS was a good thing because a lot of people in the street were coming out and doing it and you could see the rainbow signs the kids were making – it was a nice thing to see.

I love it. It is not just a job to me, it is my life

My partner works at the hospital in catering too and we have a 14-year-old daughter, Amy, who has been brilliant throughout. We are proud of her as well.

I would like to think the NHS will still be here in 72 years’ time because I do think it does a good job and I think people might appreciate it more because of Covid.

Mairi McDermid (50). Lead midwife at Queen Elizabeth University Hospital, Glasgow.

IWORKED in various jobs over the years and did not come into midwifery until I had my own three children. I had the opportunity to retrain when I was in my early 30s and that is what I did after my own experience of seeing how wonderful these midwives were. I wanted to do it too.

I love it. It is not just a job to me, it is my life. Let’s be honest – it’s not a job you do for money. You really have to have the passion and drive there and it can be very difficult at times but it is such a wonderful, diverse job and nothing compares with it.

It does not matter what walk of life you come from, everybody is the same when they are going through labour. They all have the same worries and we can help everybody get through the worst of times for the best of times.

It is bizarre because people go through all this and then there is that moment when the baby is born and is in the mother’s arms you cannot explain. It is just an amazing feeling to be part of someone’s life at that time.

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Nothing compares to that, apart from holding your own children. You are the first person to touch the baby – it is just so special.

Of course, there is not always a positive outcome. Helping women get through that just makes you feel very humbled. Covid-19 has made it so difficult. People can bring their birthing partners with them for the labour but then they have to go home.

We have tried to make the best of it and we have seen some nice positive things happen.

Mums are cuddling their babies more often and breast feeding rates are going up because they are not being disturbed.

We have seen the women relax a wee bit more because they are not sitting waiting for visitors or thinking they have to put their makeup on. They don’t need to do anything but relax and talk to each other and help each other. It has been difficult and challenging but one of the positive aspects is that the women are much more relaxed and focusing on the babies more than anything.

I don’t do this job for recognition but someone in our street has been piping every Thursday during the Clap for Carers and it is just fantastic

We do have to wear more PPE than normal. Wearing the masks is quite difficult because you are usually smiling so you have to find different ways of being encouraging.

We could always do with more midwives and staffing the wards has been really challenging with Covid-19 but the whole team has been fantastic.

Everybody has really played their part and stepped up. We have had some people become unwell some who have had to shield.

We have had to work out staffing when people are being off for 14 days or seven days so that has been really challenging because you don’t really get a minute’s notice and people are still having babies. That’s not stopped. Babies don’t care about Covid – they just come when they want to come. We have had staff rotate round all the areas and people have stepped up and gone and worked where they have been needed so that has been a huge thing.

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I don’t do this job for recognition but someone in our street has been piping every Thursday during the Clap for Carers and it is just fantastic. I feel so humbled and embarrassed but to be so appreciated is amazing.

The recognition we have been getting is not necessary but it has been fantastic and I just hope it has made others realise the important role we play in everybody’s lives.

I don’t need a clap every Thursday but I do think it is nice that people take note of what we do. We do get that privately anyway from people saying thank you when they leave the wards but it is so nice to have that public recognition.

I think the NHS is wonderful and I’m really proud of what we have done. I just hope there is always going to be funding for the NHS.