Shirley's story: Arthritis care needs a clear pathway

Shirley Lenehan, 62, from Argyll and Bute, was diagnosed with osteoarthritis at 28, then rheumatoid arthritis two years later. She believes the Government need to ask those with MSK conditions what they need then build a clear pathway to improve their quality of life.

Lack of support after osteoarthritis diagnosis was a shock

I was born 12 weeks early. They didn’t expect me to survive and I had a lot of challenges, gut and kidney problems then, at 12, I developed osteomyelitis in my right knee and had constant pain in my joints. By the time I was 21 the pain had spread into my hands too making my work as an NHS medical records officer which very hard.

I had back pain from being 11, but after my first child at 25 my pelvis separated, the pain went throughout my body and I started to lose power in my hands. I was 28 when I was diagnosed with osteoarthritis but offered no real support or signposting which I found quite shocking. Then, two years later, I was diagnosed with rheumatoid arthritis too. From that point I just deteriorated and had a number of falls, the worst 24 years ago which ripped all the ligaments in one leg and damaged nerves in my lower back.

I was eventually given pain blocks into my knees which gave me relief for about 12 weeks but, by 2004, they couldn’t do them anymore because my blood pressure was so high. Four years later they decided to replace the patella in my knees which was noted as ‘failed surgery’ and caused a lot of nerve damage, even now if I fall, I can’t get up.

After that operation the physio told me I couldn’t have the in-depth treatment I needed because the NHS board I lived under didn’t offer it to under-65s. I went home unable to walk.

In 2005 I had a second major bleed from my oesophagus due to medication and I’ve never seen a rheumatologist since. I’ve gone downhill rapidly since 2014, I’ve lost the use of my right arm and am in so much pain I’m losing the will to live.

Multiple health conditions and no real support

In April 2015 they found a stage 4 tumour on my shoulder and, after investigation they found five masses. I had non-Hodgkins Lymphoma and needed immediate treatment. I started a six-month course of chemotherapy and was also referred to a consultant who said they’d found cancer in my head so I needed more chemotherapy specifically for that. By December they’d got on top of the blood cancer but I still needed 15 radiotherapies for my shoulder before, in May 2016, they told me I was cancer free.

It was a huge relief but my other health challenges seemed to have doubled, I’d walk 10 steps and feel exhausted, so I had to rebuild myself.

The biggest problem is my sensitivity to many drugs which makes treatment complex, they’ve tried many over the years and decided pain management is the best way to deal with it but it’s hard. A few weeks ago I was gardening and damaged the ligaments in my hand but it was the weekend so nobody could x-ray me, they just gave me anti-inflammatories and a sling. I explained I have arthritis but it’s like they’re only interested in what they’re attending to and it feels like you’re just left to get on with it. I did have a shoulder replacement in 2016 and I’ve since pleaded to be sent to a rheumatologist to talk about new therapies and drugs, I’m willing to try anything but they’ve said the arthritis is too advanced. 

Government need a clear pathway for MSK conditions

Having read the proposed Framework for Long-Term Conditions, I’m of the opinion that this ‘one size fits all’ approach will not meet the individual needs of many of the people suffering long-term conditions in Scotland.

I’ve spent 35 years lobbing and working with NHS Scotland on patient care. One of the biggest problems is a lack of empathy, particularly for people with long-term conditions because they don’t consider the effect on patients and their families. My husband had to give up work to look after me 14 years ago.

I want the Government to provide a clear pathway for people with MSK conditions and to ask people what they really need. Swimming pools are the only way I can exercise but there’s only one heated pool locally at a hotel and I can’t afford £50 to go swimming.  There’s a lack of communication between hospitals and GPs, nobody seems to know what resources are available in the community for people with MSK conditions and I believe, if they address that, the drug bills wouldn’t be so high.

I feel less hopeful than ever really because it’s like those with chronic health conditions are being targeted.

We don’t need sympathy, we need recognition and a proper pathway that will help people live a better quality of life.