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Hina Sharma 5 May 2022

Knowing what to expect

A game changer
Peer support Our thoughts Advance care planning
Airbus A380

Today my brother was on his way to India. As he and I were catching up on the phone, he proceeded to tell me that he preferred the A380 aircrafts to the Boeing 787 since the seat configuration is better. He also expanded on why one was better than the other. He has nothing to do with the aviation industry, he is a professor of economics. But he likes to know what to expect on his flight, I suppose. In my estimation this is a mad level of wanting to know what to expect and I teased him endlessly about it.

But I think wanting to know what to expect is a universal feeling. Most people want to feel somewhat prepared for what comes next. Like looking at the menu of a restaurant before going there for lunch. This feeling, I would think, magnifies when the question is not what manner of seat you need to sit on for the next 8 hours, or desserts you’d like to try, but impact your wellbeing and the decisions you make about your health.

Going in blind

In my role as Peer Navigator I often speak with callers before and after appointments. I had a caller recently who had a social care assessment meeting scheduled. It was an important meeting where her care needs would be assessed, which in turn would have a significant impact on her ability to ensure she maintains a good quality of life. However, she was given no guidance about what to expect in the meeting, the questions she would need to prepare for, the process involved, nothing!

The caller has chronic fatigue syndrome and that meant she finds researching on the internet difficult. But I was able to do some research for her, and when I searched there was a page on her local council website which covered all the points that someone may be keen to know prior to the meeting. Brilliant. But I couldn’t help wonder, what was the point of this resource if the person who needs it the most was never told about it? The social care worker who had scheduled the meeting, who perhaps was best placed to share this link, did not mention it all.

Another caller in her 80’s, who again was not happy to use the internet, had been invited for a colonoscopy — a test she was sure was not an easy one but had no idea what it entailed or how to find information about. The result of this for her was uncertainty and largely avoidable stress. Again, there are superb documents detailing what happens and common questions for a colonoscopy within several NHS trusts and one would think must be attached to the appointment letter that came to her in the post. Unfortunately not.

Through my calls I have numerous examples of this — a single mother with complex needs for herself and her child, spending hours on the phone trying to get the prescriptions sorted for her and her son. Once the prescriptions are issued, a visit and queuing at the pharmacy must follow. This when she herself has fibromyalgia and struggles with fatigue. One would think the GP service may direct her to online prescription services, cutting down time and effort for her. But again no, it didn’t happen.

It doesn’t need to be this way

The irony is that the NHS and indeed condition specific charities often have really useful resources which are created with the user in mind, to make life easier for them. They are comprehensive, enabling people to know more and therefore feel empowered to understand what care the should receive. But finding these resources is an endeavour in itself and one that most people with a serious diagnosis may not feel up to.

As Fatima Khan-Shah in a recent Kings Fund conference said:

You can’t access what you cannot see.

Fatima Khan-Shah

Don’t google it!

This is similar to another issue, people often told not to google something. Conditions, treatments the lot. Two years on from my diagnosis and post two coilings on the brain, a friend and I joked that I could probably do an aneurysm coiling myself. I had seen as many videos as youtube could serve up on the procedure; I had read articles in the BMJ and numerous articles from journals of radiology. Thinking back to the planes, my brother and I obviously share genes on research. Mine is relevant and therefore not mad, of course.

All of this research made sense to me because I was curious as to what had happened to me and also because I was trying, desperately, to study the statistics on outcomes and hope that somehow they could predict the course of my own aneurysm.

It turns out that reading stats doesn’t impact outcome and I found myself needing more treatment. However, it also meant that when I met my consultants to discuss my options of treatments last year, he said he had never had to answer as many or as detailed questions as the ones I had asked. To date I’m not sure if he was mildly irritated with my questions or it was a genuine observation. Either way if this was true, why was it true?

We can prepare people, and we must

Why do patients need to look so hard for information and why do the ‘experts’ not facilitate this? In my estimation health and care professionals are experts in the knowledge and experience they hold. But what I don’t understand is why they do not share this knowledge more freely and expansively.

If down to time pressures, this seems counter intuitive to me. If they have a finite amount of time for an appointment, isn’t it better that the patient has some knowledge versus none? Of course there are valid pitfalls when depending on google, but clearly there are well researched and written resources that are underused.

When your health chips are down, there is such a distinct lack of control you feel. Information is one of the only things that makes you feel somewhat in control and helps you manage expectations.

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