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Patient voice

"You feel that your life has been cut short"

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Alexis Barber, 24, was recently diagnosed with osteoarthritis in both knees. While one nurse acted as her advocate, others couldn’t believe she had developed this condition at such a young age

The patient

After 11 years of chronic pain, last July I was finally diagnosed with arthritis in both knees. An MRI scan showed the cartilage on the inside of my left knee had worn away completely. This was probably the result of a sports injury when I was 13, when I started experiencing knee pain. Because I was so young, my discomfort was dismissed as growing pains. As a result of having to bear too much weight on the right knee to compensate for being unable to walk properly on the left, that knee also has arthritis.

The nursing care I’ve had has been varied. The general attitude from nurses was I needed to lose weight, which is difficult as I have an underactive thyroid and am unable to exercise because of knee pain.

A community nurse in a GP practice took my concerns seriously. She thought I might have arthritis and flagged this up with the GP. Despite the nurse fighting my corner and urging the GP to send me for an MRI scan, the GP didn’t appear to listen and instead I was given stronger painkillers. After my third visit, that nurse was finally heard. The GP sent me for a scan, which showed the nurse had been right all along.

One of my first times in hospital was when I was 17. My knee suddenly swelled, I couldn’t walk on it, and I was in hospital for three days, but still the problem was not diagnosed. I was made to feel like I was a malingerer and the attitude I had from nurses was dismissive. They didn’t listen when I told them I was allergic to paracetamol – even though that allergy was noted on my hospital wristband – so taking this medication made me even more ill.

I need an arthroscopy to sort out my worn knee, and a partial or total replacement in the bone of the left knee. I’m now on a waiting list, waiting to see if anything can happen to ease my pain.

I would urge nurses to consider the individual boundaries of patients with arthritis – for they may not be able to do much exercise – and understand how arthritic pain affects people’s lives. For someone aged in their 20s, like me, you feel your life has been cut short. Nurses can help by looking at you as a whole person, not just a condition.

Community nurses can support patients with arthritis by providing consistent care – they can build a relationship with you, understand when you’re having a bad time with your condition and champion your cause if they think your doctor can do more to help.

Expert comment

It is rare to see a young patient with this condition, so if they do present with knee pain, you need to take a full clinical history and look at risk factors. This patient had a trauma when she was young, which made her at risk of arthritis at a young age.

I would like to have seen this patient referred to a physiotherapist. The problems she has experienced with having to put extra weight on her other knee could have been addressed earlier through physio.

Losing weight is one aspect of managing arthritis, but patients with conditions such as thyroid disease find this difficult. These patients should be given advice on weight loss programmes, which can also be a source of emotional support and lifestyle advice.

When considering pain, nurses should ask patients if their medication is effective and suggest alternatives such as ice or heat packs, TENS machines and topical gels. To maximise the effectiveness of medication, they need to discuss staggering it throughout the day rather than taking it all at one time.

I was pleased to see a practice nurse did flag the patient’s difficulties up with the GP. It shows the importance of listening to what a patient is telling you rather than being dismissive. Practice nurses can do a lot to support patients with arthritis and most rheumatology or orthopaedic departments would welcome them spending time with a consultant or nurse specialist so they have the latest information.

Learning points

  • Really listen to patients. Don’t dismiss their concerns because their case isn’t “typical”
  • Find out whether patients’ medication is effective and offer alternative treatments
  • Improve your knowledge; learn from arthritis nurse specialists

Colin Beevor is matron and clinical nurse specialist in rheumatology, Queen Alexandra Hospital, Cosham

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