THE reputation of the NHS has been declining for years. Scandal after scandal followed by depressingly similar inquiry reports show how little has been learned and how little has changed in the culture or management of the NHS.
Before it turned into the National Covid Service, it was far from immune to negligence claims. In the years 2018/19 it paid out £1.4billion in compensation; and a further £1billion was spent on legal fees. Since then ever more reports are coming to light of poor care, negligence and, in some cases, downright cruelty, particularly towards vulnerable patients who refused Covid tests and vaccinations.
I spoke to one unvaccinated man who was left injured after his two-week hospital stay, during which he and his family felt as though he had been kidnapped. After he returned home, his hair fell out, he thinks because of drugs he was prescribed and stress. Compression socks had to be cut off as they had caused his feet to swell badly.
Steve Sapseid, 63, from Chichester, was admitted to hospital with severe migraine and hypoxia – a lack of oxygen in the tissues. Staff took away his hearing aids, glasses and mobile phone and when he asked for them back, nurses claimed they could not find them. He was therefore unable to speak to his wife Jenny. It was not until Jenny issued a 63-page affidavit detailing poor care, and a formal notice to Marianne Griffiths, chief executive officer (CEO) of West Sussex Health Trust (WSHT), asking her to provide evidence of authority over Steve that superseded her own, that things changed.
Griffiths was told that if she was unable to provide that authority, she was to instruct her staff to let Jenny talk to her husband immediately and to remove any do not resuscitate (DNR) notice they might have applied to his notes. It was only after that move that Steve could speak to his wife, received more humane treatment and after two weeks, made it home. Until then, he thought he might die.
Steve was admitted to St Richard’s Hospital ICU in Chichester in April 2021. He runs a pain relief clinic and is a web designer, and had already decided not to wear a mask, not to take Covid tests and not to accept the experimental jab: all bodily autonomy decisions he has a legal right to make but frowned on by the NHS. (The NHS threatened to sack their own staff who refused vaccination.)
Steve said: ‘The doctors were horrendous; the nurses were lifesavers. If it wasn’t for the nurses, I think I’d have gone crazy.
‘I was in a bad way when I was admitted. I’d had severe migraines three days in a row, and I don’t suffer with migraines. I’d also been suffering hallucinations at night. By night four, I lost my balance and fell and hit my head on the bedside table. I was delusional, unable to eat or drink and my body wasn’t absorbing oxygen. Jenny called an ambulance.
‘At the hospital, they took my hearing aids, glasses, and mobile phone and for the first four days I had no contact with Jenny. I was being given four or five pills in a little paper cup. They refused to answer my questions about what drugs I was being given and I was too ill to fight them.
‘I was told I had Covid, but I refused all Covid tests, and at one stage, four doctors came in to tell me off. I kept asking about my phone, glasses, and hearing aids but the best answer I got was “I’ll ask.” I either never got a reply or was told they couldn’t find them.
‘They were convinced I had Covid as my blood oxygen was dangerously low, but I had no respiratory issues. I’ve never felt so ill and weak. Jenny thought I had pneumonia. A friend later went in with the same symptoms and he was diagnosed with hypoxia, not Covid.’
Steve has four children, Kaylum, 26, Kyra, 25, Xavier, 21 and Didier, 18, with Jenny, a pain relief therapist, massage therapist and nutritionist. Kaylum is a herbalist, personal trainer and sports therapist, and both Kaylum and Didier operate the Scenar pain relief device used at Fresh Start Health, Chichester, the family’s pain relief practice.
The family avoid drugs where possible but felt they had no choice but to allow Steve to go to hospital.
He said: ‘The family wanted me to have supplements, home-cooked food and filtered tap water. Kaylum came to visit every day and brought two litres of water with him. He wasn’t allowed to see me, and they refused to give me the water.
‘Jenny was incredibly worried about me, but they would not give her any information. When she rang, they’d say things like “You need to prepare yourself. He won’t be coming home”.’
Jenny said: ‘They kept saying they had to test him for Covid, and they told me if I went to the hospital I would be arrested.’
Both Steve and Jenny were members of Stand in the Park and other local Covid action groups. One of the members, Nicola Smith, who had worked for her local council in finance, began studying law after the pandemic hit and offered to give them a legal weapon to force the NHS to act in a more humane way.
It was day four when the notice was served and although the family received no answer, attitudes towards Steve changed swiftly. He said: ‘Suddenly the nurses found my glasses, hearing aids and phone. I was allowed the water and food from my son.
‘The medication they gave me changed. I started to recover and I wanted to go home but they kept telling me that there was something wrong with my blood tests. I had to fight to get out and I left around day 11.
‘Once I got home, I was in a bad way for three months because of what they’d done. I couldn’t walk properly because of the pain in my feet caused by the socks. I got quite depressed. I’m self-employed and it was months before I could get back into the office. It was a tough time for everyone financially.’
Jenny said: ‘He was so weak he couldn’t get out of bed. He needed a Zimmer frame to walk.’
Control over personal healthcare is important but even with a legal power of attorney (LPA) relatives have very little say over their loved one’s care. Patients need to have made an Advanced Decision Notice (ADN), a living will, that cannot be overridden in the way that an LPA can.
Nicola’s letter was so successful she launched My Medical Choice (MMC), a private members’ association which has around 600 members. They provide information on legal protection and medical treatment options in emergency situations. MMC give advice on avoiding contaminated blood, explain how to refuse procedures needing blood or blood components, and have created a national safe blood donor database. They will provide an ADN document, which warns health professionals if they ignore a patient’s wishes they are liable for personal prosecution, a hospital-to-emergency-contact SMS service which sends a message to your ICE (in case of emergency) contact, and a wallet-sized advance decision notice which alerts first responders to check for your wishes. MMC’s document ‘Dealing with Medical Gatekeepers’ tells you how to negotiate with the NHS.
Steve and Jenny still do not know what medication he was given and have requested Steve’s medical notes, but St Richard’s have yet to provide them. He was never told what caused his hypoxia and has not received an official diagnosis.
Steve said: ‘I’m very angry, it was a frightening and isolating experience. If Jenny and Nicola hadn’t intervened, I feel like I could have died. I’ve been asking for the notes for over a year. They are supposed to provide them within 30 days but can request endless 20-day extensions.’
Jenny said: ‘I sensed he was in danger, but I was powerless. It was a horrible feeling. I am so grateful to Nicola. Without her help, Steve may never have come home.’
Steve gave permission for WSHT to discuss his care, but spokesman Nick Brooks said: ‘We simply cannot offer commentary on someone’s care, or offer external verification of things that are being said – either would breach the duties upon us.’