Guest blog from Jane Taylor, member of the Expert Advisory Group to the Taskforce on Multiple Conditions and expert by experience.
Many years ago on a teacher training course, I spent a week shadowing a pupil in a large comprehensive school, doing everything he did. By Friday I was exhausted by the demands of eight different teachers: their different styles of communication, their assumption that their subject was the most important and the lack of communication between them in scheduling homework wiped me out. That experience set me up well for negotiating a healthcare system while living with multiple long term conditions.
Aged 26 I developed rheumatoid arthritis, five years later I was diagnosed with anti-phospholipid syndrome. The next decade brought osteoporosis, psoriasis and osteoarthritis. You probably won’t be surprised that I also suffer with depression. Professionals talk about the disease burden and sometimes the treatment burden of living with multiple conditions. What is rarely examined is the health services burden and that is what I will discuss here. We have a system that still works on a single disease model. Different consultants and hospitals don’t communicate. They rely on the patient or carer (you might be both) to connect everyone in an increasingly fragmented system. Despite some great treatments in my 30-year engagement with services, I have too often felt completely disempowered. Here are a few (not the worst) experiences I have had.
Appointment scheduling: Multiple conditions means multiple appointments, in multiple settings. Appointments arrive set for the same day – rearranging one often means a long wait for another appointment. Miss two with some hospitals and you are out! Speaking to someone who understands the complexity of your situation is difficult. I could paper a room with appointments cancelled and rescheduled by hospitals for myself and my daughter. Once physiotherapy was cancelled four times in a row with rescheduling letters arriving before cancellations. At one annual GP review clinic the doctor simply forgot to turn up. A full waiting room was eventually sent away. Prominent messages in clinics admonish patients for wasting resources by not attending but not one refers to the patients’ wasted time.
Monitoring: I require regular blood tests to monitor conditions and medication effects. Sounds simple enough? Frequently test results go astray. Two of my centres are in trusts that use different inflammation measurements. This is a problem for one consultant and so I must travel miles simply to have a blood test that the consultant can use. I hear a lot about ’shared care’ between GP and hospital. In my experience that means neither takes responsibility for organising provision. Sometimes the effort of booking another routine test is one thing too many so I put it off.
Standardised letters: Despite hours of effort trying to be a ‘good’ patient, I occasionally get letters which are insensitive at best. One letter told me my biologics treatment would be stopped if I didn’t keep up with my blood tests. I had, but results were not getting communicated. When I spoke to the sender of the letter, I was told to just ignore it, it was a ‘standard’ letter.
Drugs: Despite having multiple conditions, all requiring drugs, I don’t qualify for free prescriptions. Chronic illness generally makes you poorer, so this is an extra burden. I know people who can’t afford a yearly prescription (or weren't informed that this exists) who have had to choose which drugs they can do without. Poor co-ordination and communication between multiple prescription providers mean drugs are not always available when needed. When hospitals contract drug services to private providers they become more complex. When I switched hospitals there was a long delay in switching contracts between providers. It got to the stage where the provider phoned me to ask for the return of my remaining biologics. A mistake in the new contract with another provider meant I was mistakenly put on a biosimilar drug. A company nurse – someone who didn’t know me and who would never deal with me again – assured me that this was all fine when I queried it. The error only came to light at my next hospital consultation.
Recently I had a fridge full of shiny new injections delivered by a different company but no nurse assigned to visit and enable me to start my treatment. Several phone calls made no difference. Tweeting my frustration finally did the trick.
Changing hospitals: Avoid this! When my rheumatologist retired we decided to shift my care to a hospital which already managed another of my conditions. Surely this would be easier? It took a year to finally get in front of the consultant I had been referred to - because the hospital struggled to schedule an existing patient into a new clinic.
As a patient I advocate for change but when I hear professionals talking about new delivery models which will empower me and a digital point of entry which will revolutionise my care I do wonder if they have ever thought to shadow a patient with multiple conditions. They might find it enlightening.