The NHS Consultation, part 2: Your experiences

 The Labour Government has launched a consultation on the NHS. 

This is the second of three blogs documenting my responses to this consultation. 

Q1. Please tell us about a recent experience of health and/or care services in as much or as little detail as you wish.

This could be an experience where you or a family member accessed care as a patient. Or it could be about the overall performance of the health and care system. Please tell us about any positive or negative aspects of your experience and be as specific as you can.

A1. The following are my memories of my partner being hospitalised after a fall in February 2024. For information, at the time, as well as the injuries resulting from the fall, she was undergoing treatment for a squamous cell carcinoma of the oesophagus, and she had a number of neurological conditions, including a Vestibular Schwannoma (that was treated with radiotherapy in 2017), hydrocephalus (treated with a VP shunt in 2018), and epilepsy (partially controlled with medication - liquid, not tablets, due to dysphagia arising from the oesophageal issues). I have been my partner’s main carer since she was first ill with the schwannoma in 2017.

On the evening of 9th February my partner fell at home, and injured both of her upper arms. It was quickly apparent to me that she needed to be seen at a hospital. We considered an ambulance, but, knowing that an ambulance could take hours to arrive and that she could walk, I called a taxi which took us to our local A&E, where we arrived about 7.30 pm.

It was chaotic and unwelcoming. We waited seemingly ages to be seen; we were both tired. The caring I do for her is very stressful. I was tired, and concerned; I had already felt myself to be at my limit for what I could do by way of caring, and I knew that more would be required to support her with these injuries. Neither of us got any rest while we were waiting for her to be seen, I was even expected to stand for part of the time, for there were too few seats for all those present; my partner was in pain, I was falling apart mentally. I knew that, in time, my partner’s pain would be addressed, but I knew there to be little hope for any respite myself.

During the night my partner was taken away for various scans and tests, and then assigned a bed in a corridor. It was around 7am in the morning that we were told that she had badly fractured her right shoulder, and dislocated her left; they could do nothing for the right one, apart from allow it to heal as it was, but would perform an operation to reset the left one. Around 9am she went up to theatre for that operation, and  I left the hospital and went home.

I returned around 5pm, to find her still in the recovery area, the operation having taken place that morning. The staff were struggling to find a bed on a ward for her. I stayed with her until around 10pm when she was finally on a ward.

She remained there for just over a week, with both arms strapped up (because of the injuries). Meals were provided for her, but the ward staff did not help her eat at all - only the catering assistant, who brought the meals, ever offered to help her. She asked the nurses for help to eat, but was told ‘No, you’ve got to learn’ - as if she were a naughty schoolgirl. Ward staff made it clear to me that I was only to visit at approved times, and that excluded meal times, so I was not allowed to be there to help her with her meals. I did take in food from home or the canteen at the hospital that I had bought myself, and helped her eat those; that was more or less the only sustenance she had in her time there.

The nursing staff on the ward did not seem to have a clear understanding of all of my partner’s conditions and comorbidities. They gave her paracetamol tablets for her pain; we had been cautioned that she should not have tablets because of her oesophageal stent and the ongoing cancer which caused intermittent, severe dysphagia (swallowing difficulties), and I mentioned this to the ward staff, but they did not change the way they gave her painkillers. The staff also gave her her medication at irregular times of the day; two of my partner’s prescribed medications are anti epilepsy drugs, prescribed to be taken twice daily; what this means - and what pharmacists, neuro doctors and nurses, and patients and carers know is that the interval between taking each dose should be as close to twelve hours as possible, to avoid peaks and troughs in the volume of drugs in the body. The morning ward drug round was around 6am; the night time one was anything between 7pm and midnight. As my partner recuperated after leaving hospital she suffered more than her usual number of partial seizures, and I am sure the irregular frequency of medication doses during her stay in hospital was the cause. 

The physios came to see her on the ward two or three times, and examined her walking; they said she should be able to use a walking stick in her left arm. That was very painful for her to try; we subsequently found out that she had a rotator cuff injury to the left shoulder, which would take a couple of years to resolve; the staff did not seem to understand the complexities of her bilateral arm fracture. I took in a handling belt, and showed the staff that my partner could walk safely, with me supporting her with the belt; the hospital physio said they had not been trained to use handling belts. Without the handling belt and the exercise I was able to help her with, my partner would most probably have lost leg mobility due to her arm injuries.

After a week on the ward my partner was discharged to a local care home for a couple of weeks to allow her injuries to heal enough for her and I to manage at home. The hospital staff gave me copies of the paperwork that was passed to the care home; this contained details of my partner’s comorbidities, or at least, it listed conditions that were believed to be her comorbidities. There were significant errors and omissions in this list, including there being no mention of hydrocephalus and her VP shunt, or of the oesophageal stent and swallowing issues. The information on this form was never discussed with either my partner or me; it did include that my partner was considered to be at high risk of malnutrition - not surprising, I thought, after she had had no help from the ward staff with taking nourishment for a week.  

The actual discharge was appallingly managed. My partner was moved from the ward to a ‘discharge lounge’ - a cold, unwelcoming room on the ground floor, a long way from the ward - early in the morning, without being given any breakfast or being dressed. I went to the ward with a wheelchair to collect her around 10.30, only to find her not there; the ward staff had not told me that she had been moved. In the discharge lounge I helped her dress; there were other patients in the discharge lounge who had also been taken there without any breakfast, and were told they would be waiting there for their transport for eight hours or more. 

Following her initial recovery we consulted a private osteopath regarding rehab for my partner’s injuries; he asked us to obtain her relevant hospital records and NHS Summary Care Record, which we did. These showed the rotator cuff injury; we also found some explanation as to why my partner might have been treated the way she was. 

Firstly, the incorrect details of comorbidities passed to the care home were obtained from my partner's NHS Summary Care Record; key details were missing from this regarding my partner's medical history, and what it did show - regarding sensitivity to epilepsy medications, and known conditions - was actually wrong. Specifically, the care home was told that my partner had Wernicke’s Encephalopathy (a condition that implies gross levels of alcohol abuse), which she doesn’t, this was a misdiagnosis before hydrocephalus was diagnosed and treated. The doctors in the A & E department, and possibly other hospital staff, had accessed my partner’s SCR without seeking her consent (or mine on her behalf - I have power of attorney), had not discussed the details with my partner or me, and had passed incorrect information from an SCR to the care home without consent. The doctor in A&E who recorded in her notes that he accessed her SCR did not record seeking consent or the reason for not doing this. 

Also, the notes showed that the staff in A&E had concerns that my partner might have been the victim of domestic abuse; moreover, they documented in her notes that I had said something to my partner that indicated that I might be abusing her. They did not discuss this clearly with her, and did not mention this at all to me; they did not have my consent to record details of whatever it was I said in my partner’s notes. I was under the impression that anything said in a hospital was confidential, and that it could only be recorded with the consent of those involved in the conversation: irrespective of this, I shall never trust a hospital worker again. The allegations of domestic abuse were wholly unjustified and I have raised a formal complaint with the hospital for recording the information they did on my partner’s records; I have since asked how the recording of information in this way fits in with GDPR, and was given an unconvincing explanation by the hospital medico legal team. The allegation does, perhaps, explain the attitude of the ward staff towards me during my partner’s stay there, although does not for one minute explain their attitude to her which I believe was fuelled by misinformation obtained from her SCR without consent, either by them or passed to them by A&E staff, regarding her comorbidities and implied allegations of an irresponsible lifestyle. 

It is often forgotten that most of the population have, at times in their lives, known people who work in the medical sector. Indeed, I myself worked on the NHS IT programme for three years. My grandmother was a nurse during the war; my great aunt was a nurse until she retired. I have known doctors, pharmacists and nurses as friends throughout my life, indeed I was married to an RGN for twenty years. One friend, a consultant who works both in the NHS and private sector, frequently refers to the processes, skills and knowledge of, and patient information available to, some NHS practitioners as a ‘shit show’. Some of my acquaintances could be remarkably callous in their attitude to patients they were responsible for, perhaps as a way of struggling to cope with the reality of a life-or-death job; my ex wife talked of part of a neuro ward on which she worked as the ‘cabbage patch’, and of night shifts being busier for her than they should have been because of one of her colleagues was spending much time away from the ward having sex with doctors who were also on the night shift. My stepmother, who I knew for over forty years, was a SRN, training in the NHS in the late forties, and could be truly rude; she would judge people by her standards and ignore other points of view. She had nursed babies in the early 50s, and in later life would comment loudly on ‘what that mother had been up to before her child was born’ when seeing disabled youngsters in the street; she cruelly blamed my grandfather (then in his late seventies) for his own ill health, saying that it was all his fault, and that he should eat better and spend less time in his local pub - despite that being about the only place where he could socialise daily in his village. All of this experience has led me to take a very ‘realistic’ view of ‘our NHS’; it is not the ‘envy of the world’ that our leaders want us to believe it to be. The story I have related about my partner’s admission to our local hospital surely demonstrates that the view of my consultant friend is right, and that in some ways things have not improved at all since my stepmother was on wards in the 1970s: while many NHS staff today are excellent, there are those that, for whatever reason, lack the necessary skills or do not have the correct information available to them to provide good care, or believe that rules (such as about consent) don’t apply to them, and that their moral judgements of patients are an acceptable justification for poor standards. 

Government needs to admit to itself and society as a whole just how awful it can be to be a patient undergoing treatment in the NHS today; until this truth is accepted it may be difficult to address the many problems faced by the NHS - and the country as a whole. You can’t fix a problem until you admit it exists.