These two women have watched the treatment pathways for chronic pain rapidly change. Although their destinations were different, their journeys uncover the struggles faced when accessing appropriate care within the complex and disconnected healthcare system.
Ailsa Bosworth (left) Nikki Whittall (right)
Ailsa Bosworth knew from a young age that her father had ankylosing spondylitis, a type of arthritis that causes inflammation in the spine. But she did not make the connection when her knee began to swell in her early 30s, it was a sign of seronegative rheumatoid arthritis.
Nine months after her symptoms began, Ailsa was trying to lead a normal life, working a nine to five job in the hustle and bustle of London but one day, her boss took notice and urged her to see a doctor.
“He said I can’t stand watching you limping around the office, and instructed me that I was going to see his doctor this afternoon. So off I went down the road and got an immediate diagnosis for arthritis, but at the time serology did not exist, therefore, it was unknown if it was seronegative or seropositive." She said.
Seronegative and seropositive are terms used to describe the outcomes of blood tests. The presence of two proteins in the blood used to diagnose rheumatoid arthritis are rheumatoid factor (RF) and cyclic citrullinated peptides (CCP). Seropositive refers to the presence of RF and/or anti-CCP antibodies, whereas seronegative refers to the absence of both antibodies.
Rheumatoid arthritis affects around 400,000 people in the UK. It is a systemic autoimmune disease characterised by inflammatory arthritis and extra-articular involvement and is caused in many cases by the interaction between genes and environmental factors.
Ailsa has now lived with the disease for over 40 years and has experienced seeing the treatment pathways change in the medical industry.
Shortly after the diagnosis, Ailsa was sent to hospital to have the fluid drained from her knee and was put in a plaster cast from her ankle to her thigh, leaving her bedbound.
“This was 43-years ago and they don’t do that now. At that stage I don’t recall seeing a multidisciplinary team, that more holistic care coming from other specialties didn’t come in until after I was diagnosed, I only ever recall seeing a consultant, I never saw a specialist nurse.” She said.
On one occasion Ailsa went to see a consultant to gain a second opinion on a matter which was concerning her and she was “thrown out of her office and went home in tears.”
The implications of rheumatoid arthritis left Ailsa unaware once again that her fertility would be impacted. Research suggests that some women with RA have more difficulty conceiving, it took 5 years for her to fall pregnant with her daughter Anna.
Once Anna was born the arthritis had spread throughout Ailsa's body and she underwent her first knee procedure, which came with a lengthy recovery period. She has since had 20 additional operations, including four on her eye to treat uveitis, which has resulted in a severe loss of sight in her right eye.
As her daughter grew older, Ailsa's health deteriorated due to the ineffective medications she was given, such as gold injections, penicillamine, sulfasalazine, and methotrexate. None of which worked.
It was not until three years later that she began receiving steroids from a new consultant, which at first seemed like a beacon of hope, but she was unaware of the irreversible harm they would cause.
“I was on a low dose that was between 5 and 7 mg, I was told that was safe but being on steroids for 20 years is not okay, and it has damaged me, there’s no question about that and it’s irreversible damage.
“I can also remember a time that I was being over-treated with a particular kind of anti-inflammatory and for two years, it sounds ridiculous now, I had tinnitus, feelings of nausea, feeling spaced out and zombie-like.
"One weekend I was really sick and I felt like I was going to die and it was because they were overdosing me."
Finally Ailsa was able to get herself off steroids in 2004 after being prescribed an anti-TNF drug (Tumour Necrosis Factor), a type of biologic which targets the proteins responsible for inflammation.
Although she found something that worked, it can not be ignored that her life was flipped upside down by rheumatoid arthritis.
Ailsa said: "This disease impacts absolutely every aspect of your life and in the early years it did take me a long time to come to terms with it. I was young and I found it quite difficult to see myself as a disabled person because I didn’t feel disabled in my head.
"When the grandchildren came along, it was a mental hurdle to get over as I wanted to do lots of things with them and I can’t get down on the floor with them, I can’t run around with them so I have to compensate by doing other things.” She continued.
“But in other ways I am fortunate, I’m still working at 74 and I’ve always been a glass half full person, I try to look at the positives instead of feeling like a victim and I try to get on with things and make the best of it.”
In 2001, Ailsa founded her charity The National Rheumatoid Arthritis Society (NRAS), the first and only organisation in the UK dedicated to rheumatoid arthritis and juvenile idiopathic arthritis and in 2016, she was awarded an MBE for her work transforming awareness for the disease.
She stepped down from her CEO position in 2019 but is still working everyday as the National Patient Champion to not only raise awareness but to also provide a listening ear for fellow patients around the country.
“Your mental health and wellbeing often get lost most of the time. I went through the first 20 years of my disease without feeling I had anywhere to go.” Ailsa said.
“I spoke to this lady last week and she was in a bad place. I wanted to wave a magic wand and to get her the help she needed. She definitely felt that she had been listened to and she didn’t have anyone, she didn’t have a network or close family or friends, she was isolated and very alone and just speaking to somebody was such a relief for her.”
However, there is still a long way to go as the NHS are continuing to introduce pathways such as 'Patient Initiated Follow-Ups' (PIFU). People with chronic illnesses would usually be offered follow-up appointments though a fixed schedule either every three, six or twelve months but under PIFU, it is the patient's responsibility to recognise when they need care.
Ailsa believes this is an unfair strategy and worries that people will slip silently into disability, but at NRAS, her team is working to ensure that patients can effectively self-manage their pain through 'SMILE-RA' .
The programme has helped over 1,800 people and the organisation is continuing to provide the publications and evidence based support needed to educate patients, families and healthcare professionals about rheumatoid arthritis.
The balancing act : managing chronic pain and a heart condition
67-year old Nikki Whittall from Merseyside has been on quite the rollercoaster of diagnoses. She has spent the past 30 years living with fibromyalgia and spinal stenosis however, after undergoing a major heart surgery in 2020, the way she could treat her pain transformed completely.
As the question ‘when did your pain start?’ echoed into the room, she paused for a brief second before recalling a birthday party, a hoover and a bottle of wine.
"I started to notice the pain when the kids were little, I had to pick them up and push them around. We had a birthday party for one of my daughters and I was frantically hoovering as we had a classroom full of children arriving." Nikki said.
"I remember standing at one end of the living room and my back went ‘boing’ and I was in an immense amount of pain. I started crying but then my friends arrived and one bought a bottle of wine and jokingly said it would take the pain away, but it didn't.”
After visiting her GP, Nikki was slapped in the face with the rather offensive comment of 'it’s just your age'. However, she continued to battle for her pain to be acknowledged and was finally sent to Walton Hospital for a five day pain programme but it was not what she expected.
“It was absolute rubbish, it was just slideshows of how people got over this condition with gentle exercise and positive thinking and I thought this is not going to help me, I’m in absolute agony.” She said.
Nikki then spent the next few months trying to get a diagnosis whilst balancing a series of life changing events. “My brother passed away, I was getting divorced, trying to find work as a teaching assistant and I think I was just exhausted but I kept carrying on to find an answer.” She explained.
After more visits to clinics, doctors and physiotherapists, Nikki was relieved to be diagnosed with fibromyalgia and was prescribed medications such as gabapentin, pregabalin, and amitriptyline to manage her pain. But just as she was back on her feet, she was knocked down again when she was diagnosed with spinal stenosis.
According to the British Association of Spinal Surgeons, spinal stenosis is a term used to describe a narrowing of the spinal canal that gives rise to symptoms of compression of the spinal nerves or sometimes the spinal cord.
“I didn’t even know what it was, she didn’t explain it to me, I went home and googled it to see that if left too long I could be paralysed. That was dismissed with the wave of a hand.”
Nikki had to take matters into her own hands again to find a solution for her spinal stenosis and It wasn’t until last Christmas that she was finally offered what she thought would be a permanent solution.
“I arranged to see the head of physio at Clatterbridge hospital and I finally felt like I was seeing the right person” Nikki said. “They found additional severe arthritis in the side of my spine and they took one look at my scans and said it merits surgery, I immediately said yes and was due to have epidural injections into the sides of my spine.”
But just as the injections were scheduled they were cancelled as she had to undergo major heart surgery.
Nikki had been having heart palpitations and once visiting another doctor, she was given the unsettling news that they found a swollen aorta. She was then handed a leaflet for peripheral artery disease and was sent on her way whilst she waited for a cardiology referral.
“I got home and read it and said, this isn’t me because it said it affects men in their 70s who are heavy smokers and drinkers and I thought, last time I looked I’m none of those things.” Nikki said.
Thankfully she was quickly referred for surgery but her heart presented more risks than initially suspected after a cardiologist found an enlarged valve and said ‘it could go at any minute’. This meant that Nikki was kept in hospital for five days as observations were made. This only escalated her pain.
Lying in bed and unable to turn, every joint, muscle and bone in her body was aching. As a temporary solution to manage the pain, Nikki was given tramadol, codeine and morphine.
Although her heart operation was inevitable and ultimately saved her life, Nikki is still living a life with pain. To this day, her spinal injections have not been rescheduled and she is continuing to treat her fibromyalgia with medication.
Nikki’s family life has also been affected by her pain. Although she feels supported by her partner and daughters, it is hard to cope with thinking about the past when she was pain free.
“I don't think they understand how I've gone from being the mum that was running around with them and always having some ridiculous scheme on the go to the mum who can’t even leave the house on her own." She said.
“Chronic pain robs you of your enjoyment, opportunities, freedom and independence. 15 years ago I would still be able to go out in the evening and dance all night, I can't remember the last time I danced." Nikki said.
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