Guest blog from Wendy Broderick, Member of the Taskforce for Multiple Conditions Expert Advisory Group and expert by experience
My journey with the NHS started over 40 years ago. As a young mother, nothing quite prepared me for juggling family, work and being ill. I had just qualified as a clinical pharmacist and was working in a hospital at the time of my diagnosis with a chronic inflammatory condition. Over the next forty years I’ve had many in-patient stays, changes in consultant and surgical procedures including five joint replacements. The multiple conditions I went on to develop were all because of the treatments I needed for my inflammatory arthritis.
I was initially treated with steroids, sometimes at high doses. As a consequence of their long-term use, I became diabetic and developed osteoporosis. The diabetes has been managed by my GP however it still requires other appointments for podiatry and retinal screening, all at different places. My osteoporosis is managed by a different hospital consultant which means another round of appointments and scans.
I received bisphosphonates to reduce the impact of the steroids on my bones. These were stopped as I needed surgery for osteonecrosis in my jaw, an unusual side effect of the bisphosphonate treatment. Maxillo-facial surgeons, rheumatologists and the osteoporosis consultant were all involved in my care whilst I was in isolation as an in-patient on an infectious disease ward. They all relied on me to connect the threads of what had happened.
Communication between GPs and hospital specialties, dentists and dental hospitals has got better over the years. There was a time when to have my bloods done at the local GP surgery, I had to ring up for the results as it was my responsibility to check my white cell count! Faxes went between my GP surgery and the hospital as the laboratory south of the river didn’t share results with the laboratory north of the river. The same is true of X-rays and I certainly did not want the risk of too many X-rays. Over the years I have had so many unnecessary blood tests because of this. All this has changed for the better, but only recently, and the computer systems now share results.
"I have learnt through being part of this taskforce that I can request on-line access to my medical record."
This has taken three meetings with the GP practice manager to achieve, and I needed to produce the appropriate NHS document, but now I no longer have to ring the practice for results. This is so much easier for them as well as me. There is also a notice now up on the surgery wall offering this to all patients. Success.
"My GP practice has also recently started an annual review which includes a diabetic check, cardiovascular check, prescription review etc. This is so much better than separate appointments for individual conditions. I hope this becomes the norm for patients with multiple conditions."
I was one of the first patients to receive the new biological treatments for arthritis and a new drug gave me back some quality of life. This required self- administration of daily injections and regular blood monitoring. For a rheumatologist medicines are the mainstay of treatment but how they are managed and their side effects can have a real impact for patients. At one point just managing the supply of drugs was a logistical nightmare; regular prescriptions from my GP for pain relief, insulin, steroids etc., methotrexate injections from the hospital pharmacy and biologic injections via a Healthcare at Home scheme. A lot of these medicines required refrigeration and different sharp bins for different types of waste including cytotoxic waste. Going on holiday with medicines requiring refrigeration is a challenge in itself.
Pain comes in so many forms, it is not one thing. If we spoke about cancer we would all understand that there are many different types and different outcomes. Over the years I have experienced acute pain, such as the pain experienced post-surgery, which resolves relatively quickly. However, people don’t understand chronic pain that continues. I have learnt that when I am not sleeping well because of painful joints, sleep deprivation upsets my mood. Mental well-being is so important to have the strength to manage chronic pain.
Physiotherapy is also a vitally important treatment, but it is so hard to access. Contracts are always changing as well as rules about where to go when. I would say I understood the NHS but sometimes as a patient it doesn’t make sense. Hydrotherapy makes such a difference, yet it is limited or unavailable. I have the resources to pay for this through a private pool session organised by Versus Arthritis. I consider myself really lucky to be able to afford this and also the transport to get there. Self- management to stay well can be so difficult for a lot of people.
My working life was within the NHS so I tried to manage blood tests before work (as after work the courier would have gone), and after work for clinic and physio appointments. I was lucky to have understanding colleagues and flexible working, but I can’t imagine this being true for many people. I also realise how lucky I am to have a car to get me to all these appointments and to be able to afford the petrol and parking charges. I would have struggled with public transport as my 30-mile round trip in the car would have involved two buses and two long walks.
Staying as well as you can with multiple conditions does require you to become an expert patient. I understand the NHS but it is really hard work to navigate through. I can’t imagine how hard this is for some people, particularly those less able to communicate. When I had my right shoulder replaced, I couldn’t drive, I couldn’t self-administer my daily injections and living on my own the day to day was really tough. I can’t remember anyone in the hospital on discharge considering any of this until I pointed it out. It is hard for individual teams to see the whole person. Staying well takes time and comes at a cost for patients. Maybe some trust managers and commissioners should spend some time shadowing patients and listening to their stories.