For APLE month (June 2023) I’ve been asked to do a blog on health inequalities experienced by those living in poverty. I will, hopefully, outline my experiences of living with a disability and recent health scare, as well as experiencing financial hardship and also cover the research that the APLE Collective conducted jointly with The Ada Lovelace Foundation on people’s experiences with NHS Primary Care Health Services both before and after the Covid Pandemic.
As those of you who have read my previous blogs will know, I used to be a Cardiology Nurse working within the NHS. Unfortunately, I had an accident which damaged my lower spine, leaving me in constant, chronic pain and with mobility issues. Also, as a legacy from my hair-raising days in my 20s (well not so much hair-raising as I was bald even then) when I was a biker, both my knees are pretty smashed up from 2 motorcycle crashes I had. In the last year, I was diagnosed, and treated successfully, for oesophageal cancer but, unfortunately, I’m left with a few side effects from both the surgery which means I have dietary issues and peripheral neuropathy (lack of feeling) in both feet and left ring finger and pinkie. On the whole, I consider myself very blessed to have survived this and I can’t thank the NHS staff, doctors, surgeons, nurses, health care workers and domestic staff for all the care and support they gave me through my treatment. It’s not until you are faced with potential fatal crisis that you realised what a precious and needed service the NHS is.
When speaking about my lived experience with poverty I often say that “it costs money to be poor”. This is no more true than when you experience ill-health and chronic conditions while living with the daily struggle with poverty. There is a strong link between ill-health and poverty and there is even some research to show that poverty itself can lead to ill-health.
In my own case, I have found that being ill with a chronic condition costs extra expenditure. For example, I find it painful to travel on public transport so have had to take taxis to wherever I was going, costing more money than I could afford, essentially keeping me housebound as I couldn’t afford to go out. We all know that food deliveries cost money but if you live on your own there is an extra surcharge if you place an order under £40. I have seen an example of a delivery charge from a supermarket being £8 for orders under £40. So you have to pay an extra 20% on top of food costs for the delivery.
In late December 2021, I was diagnosed with oesophageal cancer. The first six months of 2022 were taken up with me travelling to nearly all the hospitals in the northern half of Glasgow for the various tests and chemotherapy treatments that a diagnosis of cancer entails. Luckily, by this time I had been granted a Motability care. I know, for a fact, I wouldn’t have been able to attend at least 50% of these appointments and treatments as I couldn’t afford the travel costs. In fact, the chances are I wouldn’t have been able to attend any of my chemotherapy sessions as the hospital giving this treatment was at least ten miles away and was 2 bus journeys, taking up to 2 hrs there and back or 30 minutes each way in a taxi. Glasgow Health Board does reimburse your travel expenses on production of a bus ticket or taxi receipt. But, and it’s a very big but, you need to have the money to afford the bus/rail tickets or taxi in the first place before you are able to claim it back! My Motability car has been a true blessing in this instance and without it, being able to attend my treatments etc, I might not have been around to write this blog.
When you’re living on the breadline ill health can bring extra financial burdens forcing you to choose between eating, heating, paying outstanding bills or buying additional medical items that would make your illness, and life, more bearable. I can give you a further illustration from my own life. The nature of my cancer meant that prior to my operation I had great difficulty in swallowing. There were very few foods I could eat and they were usually in higher price brackets in supermarkets. Also, during my chemotherapy treatment, I had a PICC arterial line fitted in my upper arm. This was in-situ for 8 weeks at a time. If I wanted to take a shower or bath I had to wear a special waterproof sleeve that fitted over the PICC line. This cost me £20. I was also advised to buy a digital thermometer to monitor my temperature during this period – again at a cost of nearly £20. But the one thing I bought that I thought I would never have to buy in my life to make life bearable during my chemotherapy treatment was a beauty face mask that had to be frozen prior to wearing. I was advised to buy this as one of my chemotherapy drugs was too strong for my body and leeched out under my skin, effectively giving me sub-dermal chemical burns. This affected my feet, hands and face. My face looked permanently sunburned and constantly peeled. I was also in a lot of pain with this condition. This face mask was an extra £25 I couldn’t really afford.
These are just small, personal examples of additional costs incurred when living with health conditions.
On a wider scale throughout the UK, those living in poverty are encountering health inequalities. Through the APLE Collective, I was fortunate enough to be part of a Study carried out by the Ada Lovelace Foundation which looked at Health Services pre and post-Covid Pandemic. Along with several other APLE members I interviewed various people in my local community and their experiences of health inequalities were shocking. In essence, Primary Care Services have not recovered to the levels of access they were at prior to lockdown. The increasing digitisation and computerisation of NHS services is based on the presumption that we a) all have access to a digital device to access these services; b) can afford broadband to access the internet and; c) actually have the expertise to understand and use the apps, portals etc the NHS uses to access health provision. Those of us living in poverty feel increasingly excluded from all services, i.e. DWP, NHS etc due to this increasing digitisation. In fact, an increasing number of respondents now don’t bother going to their GP as they feel it is now so difficult to see their doctor that it’s not worth the hassle. This leads to a very great chance of missing conditions which could be treated. This is very worrying as stated earlier there is a clear link between poverty and ill health and anything that hinders our access to health services has a detrimental impact on the poorer sections of our communities compared to the more affluent.
Written by Brian Scott.