Guest Blog – Afni Shah-Hamilton
Please welcome our guest blogger, Afni Shah-Hamilton. Afni graduated from University College London in Podiatry BSC (Hons) and completed her master´s degree at Kings College London. She has years of experience in biomechanical problems of the lower leg, specialist knowledge on how diabetes and cancer treatments affect the feet and how to treat ulceration and has seen and treated hundreds of common problems like athlete´s foot and verrucae. Afni has also been trained in acupuncture to help treat conditions of the lower limb such as painful plantar fasciitis. Afni previously worked for Southwark Foot Health Department in conjunction with Guy´s and King´s College Hospital. She also worked for the Society of Chiropodists and Podiatrists as a Learning fund Project Worker and was involved in organizing a numbers of courses and learning events for them as well as liaising with members of the profession and other medical professionals.
Afni has also experienced the NHS as a patient on a number of occasions; in particular in relation to the birth of her two boys. Over the coming weeks we will be sharing her story as a serial blog related to maternity safety. What we will be doing is sharing her story and then picking out a theme which relates to her experience of aspects patients safety in the NHS over the last five years or so. These will be posted one by one over the coming weeks.
First a bit of context; Afni has severe allergies to wheat and gluten and this means that she is also allergic to a large number of medications. She is also from Asian heritage, as well as being naturally small boned and thin. These will be important as the story progresses. Also just to relieve you as a reader up front, despite her poor experience Afni has two healthy boys.
Over to Afni….
As a patient all I want to do is feel safe and cared for. But my experience, like many patients, is that lots of little things impact on this feeling.
It is rarely the one big event, it is much more insidious than that, it’s like a snowball; there are lots of things that go wrong which build and build and build so that the overarching impact is that of feeling unsafe.
The instances of unkindness or lack of caring, which for us (as patients) are safety issues, can linger on in your memory for some time and do affect your future encounters with other healthcare professionals. There is ultimately a loss of trust.
On the positive side – as a patient you can almost instantly know when an organisation takes your safety really seriously. You can feel it, you can see it and it makes a world of difference.
I will share with you via a series of blogs my thoughts, feelings and experiences of the different parts of the NHS who were involved in the births of my two sons.
So this is my story.
My first pregnancy started with me being sick at around 8 weeks. However, this didn’t feel normal. I was being sick all day not just in the morning and I was feeling permanently nauseated. I started to feel really quite ill – I was progressively becoming dangerously dehydrated and my weight was tumbling down.
This I didn’t realise was the start of hyperemesis
Hyperemesis Gravidarum (HG) is extreme sickness – almost continual nausea and vomiting all day long, which can cause dehydration, ketosis, weight loss and low blood pressure – along with feelings of isolation and despair.
I went to my GP who I have to say was fantastic then and throughout. She really made me feel like she understood what I was going through but she also didn’t know quite what to do to make me feel better. She provided me some medication to help with the nausea but the unceasing vomiting continued.
My first appointment with the midwife was not nearly as helpful as my GP. She did not understand the severity of my sickness and said ‘you’re having a baby so get flexible’. I was left feeling at a loss; she didn’t take my condition seriously or understand how my allergy made the condition worse or the implications of potential drug issues such as the inability to take certain pain relief or antibiotics during labour. So despite my signs and symptoms and my obvious distress I felt like I was being dismissed as someone who was complaining too much over something that is considered to be a natural part of life.
Hyperemesis is a severe and debilitating disease – you are unable to eat more than a few bites of food at a time, and only occasionally would they stay down. Unfortunately, there is no known cause, and no proven cure. For many women the variety of medications only help take the edge off the worst of the symptoms — and some women with severe case are hospitalized for the entirety of their pregnancies. It takes a mental toll, but it is not a mental illness. The saddest thing is that you feel miserable at a time when it should be one of the most joyous times of life.
With hyperemesis you can barely muster up energy to read a book let alone go out and about. This impacts on your partner, your family and all around you. One of the worst things about it is how isolating it is. I could not go out, or talk on the phone for a long time because it made me feel sick. However, many healthcare practitioners seem to be unfamiliar with hyperemesis and we are often classified as having a “mental condition” and told to just “get over it”. This is simply not true — it is a physiological disease, one that must be treated aggressively and compassionately.
KEY THEME NUMBER ONE – NOT BEING LISTENED TO
There is nothing more potent than being in the presence of someone who just wants to listen to you. That is, someone who is both open minded and open hearted; someone who does not get restless as you are talking (ref: David Naylor).
Conversation is a powerful thing. Done right, it can lay the foundations for future relationships and the creation of the right culture. Sadly many patients do not feel that they are being listened to or not being heard and if heard definitely not understood. There is a great talk that sums up the key issues related to conversations by Celeste Headlee:
Celeste Headlee has worked as a radio host for decades, and she knows the ingredients of a great conversation: Honesty, brevity, clarity and a healthy amount of listening. In this insightful talk, she shares 10 useful rules for having better conversations. Within this Celeste says – people teach you all about how to listen, what you should do with your eyes, your body language and so on – but she says if you are really listening, then you are really listening and you don’t need to worry about what you should be doing.
See @signuptosafety and www.signuptosafety.nhs.co.uk for more ideas on having better conversations.