It Should Not Be This Way In Our NHS
This blog is written by Alex Knutsen, a retired trade union representative and Just Treatment supporter based in the South East of England.
In April 2024, after a 3 hour ambulance wait in the early hours, I am “blue lighted” into the Royal Sussex County Hospital with a serious cellulitis infection in both legs. I remember little at that point, but ask a patient next to me why we are in ICU – I find out I am near to a fatal outcome. At this point I descend into what I describe as a form of hell.
I am moved into a “Ward” which turns out to be a long room with 8 beds on either side, the gap between each patient is approximately 12 inches, and occupied by men and women with levels of illness that run across the spectrum of clinical need. The room was formerly a store cupboard in which I had previously interviewed members as a trade union representative.
It is a “walk through” from one corridor to another area; it is noisy; it is in no way clean; and then, as now, it is obviously understaffed. I am on two types of IV antibiotics, of which a side effect is needing regular toilet breaks, but I can barely stand let alone walk. Sometimes I manage to use a bottle, but mostly I cannot pull a curtain around and wet myself. The infection is making me delirious and I am scared. The nurses apologise – it is never their fault, and later, even now, I cry for them.
Later that evening I am moved to another A&E “Ward”; a large room, no windows, curtained beds, and I never did manage to find the toilet. I am on a hospital bed which I cannot use as my legs are covered in open blisters and sores – I virtually beg for a chair and the only one available is a hard back one. The next day I threaten to crawl out of the place and go home. Shortly afterwards I am moved to the Infectious Diseases Ward in the newly developed part of the hospital, with an ensuite room, and an adequate but not full staff team. The Ward is down one floor and along a corridor – it is heaven after hell. I cry with relief at my new surroundings, some privacy, and staff who work incredibly hard. Two weeks later, as a result of several letters to the local paper organised by myself, the Trust Chief Executive states that in 2 years’ time A&E will be much improved. If only that was the truth.
20 months later and I experience 4 admissions and each time I experience the disaster that is A&E where it has been repainted and a few walls have been taken. The increased volume of patients shows with every available space taken up, beds stacked behind each other in larger areas and staff run ragged. On this occasion, I am admitted and moved 4 times in 20 hours. With the same medication I need the toilet often. The nearest is out of order, so is the next and the third is two corridors away, often with patients waiting outside. Once, a lovely nurse lets me into a new, fully equipped, empty A&E Ward – she explains that there is no staffing budget to open it.
I suggest to one nurse that she could hold a sheet in front of me whilst I use a bottle – this would not be acceptable to the other patients, apparently, but wetting myself whilst sitting next to them is okay! I have lost all dignity yet again, I am embarrassed beyond anything I have experienced before, and yet I am lucky. I have several family members and friends that maintain a presence through the day. Most patients, the majority elderly, are not visited at all.
After 20 hours, the one thing I have left is desperation. I cannot do this anymore. I stumble to the island in the middle of this large room where the doctors, consultant and admin are based. I stand patiently for 15 minutes knowing that I have been seen, then loudly ask to see the consultant as I have a complaint. I explain all of the above to him and his response is to ask if I am refusing treatment. I am not. I say I am going outside to take a break - in fact, I need the toilet in A&E reception (it is never clean, but needs must) and with my sister's help I make it.
Five minutes later a porter appears to say I am going to the Infectious Diseases Ward, that my belongings are being collected so I do not need to return to my place in the Department. I like to think this move was about to be communicated to me – the evidence says the opposite as when I get to the ID ward, no room is ready and the one I do go to is musty (but it is not A&E).
Guilt, anger, embarrassment and exhaustion. My experiences have destroyed a part of me. A&E needs major investment; not in 2 years, but right now. We could build temporary hospitals during Covid, so why not now in a crisis? Not to do so is a political decision that lies at the top of government. Britain is the fifth-largest economy in the world, yet our NHS A&E departments are like war zones. We - myself, patients, staff - paid National Insurance all our lives to, amongst other things, be looked after “From the Cradle to the Grave” (Aneurin Bevan). It is time to take a stand and defend a public health service but also to improve it. It does not have to be this way.