Nicola

Age at interview: 46

Brief Outline: For more than a year, Nicola had severe pain and restricted shoulder and arm movement. Before having decompression surgery, the GP prescribed painkillers, two steroid injections and physiotherapy but to no positive effect. Nicola felt they were dealing with her symptoms and not interested in finding out the cause of it. When she was referred to see a specialist, she felt she was being taking seriously for the first time. She is recovering from decompression surgery and feels confident that she will regain complete shoulder and arm mobility. She still experiences some pain, but doesn’t feel anxious because she knows it is part of the healing process.

Background: Nicola is a single mother and has four children ranging from 8 to 19 years of age. She works full-time as a customer service assistant. Ethnic background: mixed Black/White.

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In January 2013, Nicola started experiencing pain in her shoulder; by February, the pain had increased and by March, her shoulder started to catch. From then on she began to have what she said was an excruciating type of pain.

Nicola’s GP initially told her to take paracetamol but it didn’t do any good, and on a second visit the GP gave her Naproxen and Codeine, but the Codeine made her feel dizzy. Then, she got a prescription for Tramadol which helped her to sleep, but didn’t take the pain away. Meanwhile, Nicola had to work and look after her family while waiting for a hospital appointment.

By April 2013, her GP contacted the hospital again as well as referring Nicola for some physiotherapy. But exercise made the pain even worse and by May she went back to her doctor and pressed for something to be done. She went to the Nuffield Orthopaedic Centre, an NHS hospital to have a scan and had her first steroid injection. The pain-relief effects of the injection lasted for six months, but after that she was advised to take stronger painkillers. Nicola felt increasingly frustrated and wanted her health problem to be dealt with, not to be covered it up with pills.

Around October 2013, Nicola had and X-ray and a second steroid injection. This time it provided pain relief for two months and she was referred back to the Nuffield Orthopaedic Centre. At the hospital, they suggested intense physiotherapy and an appointment to see the shoulder specialist. She refused physiotherapy because she was in severe pain and so far it had not worked.

Nicola received a letter from the specialist who, after seeing her scan, X-ray and ultrasound test’s results, indicated she needed decompression surgery and asked her to attend the pre-op assessment clinic. She was relieved as well as angry because she said that, up to that point, no health professional had listened to her and felt she should have been referred to a specialist sooner.

The first time Nicola was told what was wrong with her shoulder was at her pre-op meeting. She said the consultant went through everything in detail and she was made to feel ‘like a person’. She watched the Technology Enhanced Patient Information (TEPI) video on her own and found it ‘brilliant’. She is dyslexic, so she found the visual information much easier to understand. Later, she was able to explain what the surgery would be like to her mother and children. She didn’t feel scare and looked forward to have it done. 

One of the things she was explained at her pre-op appointment was that after surgery, her shoulder would hurt for up to a year, but that it couldn’t be damage. Sometimes, she still feels pain but she thinks of it as part of the healing process and as a ‘good pain’.

Living with severe pain and lack of shoulder and arm mobility had an impact on Nicola’s well-being. In November 2013, she was given antidepressants as she felt nobody was interested in helping her. Her medical problem was affecting her work; her ability to look after her family; housework and she was living with little or no sleep. Nicola feels lucky, however, that she has supportive children who have been with her throughout. 

After surgery, Nicola got two weeks sick leave from work and had to go back when still recovering from the operation. She is a single parent and is finding herself struggling to get back up financially.

Nicola hasn’t done the post-surgery exercises because she feels that doing housework helps all the same. She feels her shoulder has improved, although she still gets pain when she lifts her arm. She is due to have her post-op follow up assessment soon and feels positive that, with the help of physiotherapy, she will be able to recover complete shoulder and arm flexibility and movement.

The surgeon gave Nicola a ‘brilliant’ explanation about why she’d been having shoulder pain. She came back from the pre-op assessment relieved.

I went in to a room and he [surgeon] was in there and he introduced himself. He was really nice, made me feel comfortable. Then he explained what was going on with my shoulder because I never knew what was going on, yeah. And basically what had happened is my bone had gone over in to like a little hook and it was putting pressure on my should-, on something inside there and what they needed to do was to get, remove this which then would relieve the pressure, which then would, yeah, right, which when I saw how it was, he actually showed me everything. 

It was good because I understood what was going on with my body [laughs] because I didn’t know until then what was going on and it was actually nice that somebody was actually talking to me, listening to me, showing me and, you know, I actually, it was nice. Yeah.

He explained things well?

Everything, it was brilliant, yeah. He sat down and explained to me like I was a person and it was my body and I needed to know how I felt and yeah, it was lovely. And I can honestly say I came out of that room, “Yes” [laughs] like when I had that injection [laughs].

So it was relief too, to have someone who knew-

Who knew what was going on and showed me what was going on because, as I said, nobody had really explained to me what was going on. They said it was like, “I had compression on this,” and big words that I didn’t understand and even when I’d go to physio, the physios didn’t even know what was really going on. All they wanted to do was give me some light exercise which would then heal it but they were healing something that had grown which was not going to be healed, so, you know it was a complete waste of a year which could have been done differently, I think. The pain, everything could have been done differently. 
But my pre-op made me forget about all my trouble that I’d had before [laughs]. The nurses were brilliant, they talked me through what would happen, how it would happen, you know yeah, it was brilliant. 

Nicola could only have sick pay for 2 weeks. Advice on managing financially would have been helpful.

You went back to work, how many weeks after surgery?

Two weeks. 

Two, three weeks?

Two.

Two, okay. Why did you have to go back?

Because I was only covered through, sick pay would only cover me for two weeks and I actually did lose because I’d already had a couple of days, sick days off already, and I actually lost three days as well in them two weeks. So, my income, because I’m a single parent, my income got messed up and I lost money, which was like for my house, like rent, and it did interfere that side of it and I am struggling a bit trying to get myself back, you know, which is hard. Which was a bit of a downfall.

Okay, so there was a financial implication to this?

Yeah, definitely.

And how are you coping with work because usually people take four weeks off or something like that?

Not good. I wish I wasn’t there. I wish I could recuperate a bit more, you know, and have some time to rest it a bit more and, but it’s just. [Children enter room] They’re all coming now [laughs]. 

Hi.

Yeah, I wish I could have more time off of work and I wish I could have healed it a bit more but my circumstances didn’t allow that and isn’t gonna allow it. 

Okay, anything that the doctors can do in, in that regard?

No, I don’t think so. I don’t know. That I don’t know. 

So you haven’t contacted I don’t know, I mean Citizen Advice Bureau, or Patient Advisory Services or found out about it?

I didn’t, I didn’t know that I could. I didn’t know anything about that side of it. But maybe that would not have been a bad idea to maybe get some advice on situations like mine, when you’re a single parent and you work and you’ve little children. Don’t [laughs].

That’s okay. That’s okay, he’s fine.

That would have been, that would have been a help for this side now because, as I say, it’s really been, like financially I am struggling now because I have debts. 

Nicola was at her ‘wits end’ with pain. She could hardly use her arm but still had to work and look after her four children.

I went to the doctors. Said to the doctors about it and they gave me some, they told me to take paracetamol. And I couldn’t take ibuprofen because I had a peptic ulcer because again paracetamol, it didn’t do no good. 

So I went back to the doctors, phoned them I think it was about three days later and said, “The pain’s even worse.” Okay, I’m crying with this pain which is again, oh I can’t even explain it. It was so, it hurt so much, yeah. And I went back to the doctors and the doctor then gave me some, I think it was [Naproxen] and then gave me some codeine, okay. And I took that and the codeine made me sick, made me very dizzy and I explained that to them because I went back the next day, no two days later. 

And then they gave me tramadol and it kind of worked for the evening I think. I think because it knocked me out [laughs]. So I think I went to sleep, yeah. I’m still trying to work, still trying to help with my family, okay but I am literally crying now all the time and I phoned up the, she, sorry in that process they’d written to the hospital for me to be seen and nothing was happening. 

So, the next time I phoned up, March, April, so by the end of April I was at my wits end with this pain. I couldn’t do nothing with my arm, couldn’t do nothing and they contacted the hospital again and in the meantime they sent me to physio. In the doctor they have a physio in [place name] and that made it worse. And I tried to tell the physio, “What you are doing is not working.” So round about May 16th, I went back to my doctors and I’d had enough. They phoned through to the Nuffield [NHS hospital] I think it was and they said they’d see me straight away. 

I went up there on 17th May and sat down and they scanned my arm and told, and then they see what is wrong, what is going on in my arm and they gave me an injection, a steroid injection.

The whole experience was brilliant. The nurses and doctors were good. Nicola felt they listened to her and explained everything in words she could understand.

The nurses and the consultants they were really nice. They understood what was going on. They made you feel, I didn’t feel below them or anything. I felt like an equal with them. You know, they were very friendly and watching a video and it explained everything to me in normal terms because I’m just a normal, average mum, you know. 

And sometimes doctors use words or they sit there and they just write things, you know. They never give you no eye contact. They never listen to you really and then you kind of clam up and you don’t really tell them exactly what is really going on. But that was completely different. The whole experience, from going to the consultant to coming out after the operation, was brilliant. 

Okay, so the language they used is language that we use, non-doctor, non-medical people?

Yes, he was lovely. And even the letter that he sent to my doctor, and I got a copy of it, it was, “Today I met this lovely young lady, you know, and she’s going to be da, da, da.” And it was, it put a smile on my face, you know, that he called me, “a nice young lady”. And he talked to me and explained things and the whole letter, it was nice. It was like I was an actual person and not just a number or something. So it was nice, yeah.

Nicola advises others not to give up if they know that something’s wrong. She also recommended watching the videos, reading leaflets and asking questions.

I would say, don’t give up. Okay. Just keep going back to your doctor. Just keep telling your doctor that you know something’s not right. It’s your body, so you know, you know how it feels, what’s going on. And, you know, if they say, “Go to physio”, try it but if, you know, if it’s getting worse, it’s not working. So just don’t give up. Just keep going.

Okay and regarding people who are about to have the type of surgery you had, what would you say to them about the surgery and the experience of?

The experience of the whole of it was really good, you know. It was, I wasn’t scared because everything was explained to me so I knew from the start to the end what was going on. So, and the video, watch the video, read the paperwork and ask questions and you’ll come out the other side happy [laughs].