Dear Xxxx Xxxxxxx Health Board,
I’ll start at the start. Baldy DOB XX.XX.XX was diagnosed with MS in September 2000. Fast forward 20 years - the picture is quite complex for him, including very limited remaining independent skills.
7th January 2020 Baldy attends a routine MS review with a neurologist at Xxxxxx Xxxx Xxxxx. The possibility of sleep apnea is discussed. The neurologist refers Baldy to the Sleep Clinic for assessment. She questions whether this might be a central nervous system issue since Baldy is not overweight.
5th March 2020 our daughter becomes very unwell - aged 11.
11th March 2020 our son becomes unwell - aged 10.
19th March 2020 I become ill.
23rd March 2020 Baldy becomes ill.
All 4 of us ticked every single ‘covid’ box without exception. The raging temperature, the loss of taste and smell, the extremely distinctive barking cough. We were never tested for the virus or for antibodies. The kids and I were very poorly for about 3 weeks. I define the first day of illness as the first day of raging temperature. I recognise there are likely more accurate measures.
Baldy has never got better.
Following on from ‘covid’, Baldy had pneumonia and has been in extremely poor respiratory health since the 23rd March 2020. Dr Xxxxxx at Xxxx X Xxx GP Practice has since referred Baldy to Xxxxxx Xxxxxxx to be assessed by a Respiratory Consultant for possible bronchiectasis.
We have managed to keep Baldy at home this entire time with a nebuliser we purchased ourselves and nebuliser meds prescribed by the GP Surgery that I sometimes have to quibble for because he is not under the care of a Respiratory Consultant. I get this. I get that there are protocols and procedures. However, my only motivation is in keeping Baldy alive because we quite like him.
18th September, 2020 our son came home from school a bit snotty. No temperature, no covid symptoms. Just, and I cannot stress this enough, snot. He kindly shared his snot germs with us all because sharing is caring.
21st September 2020 Baldy woke up a bit snotty. Despite the snot, he was well enough to push himself in his manual wheelchair, with very little help from me, from our house to the GP Surgery where he had some bloods taken and an ECG.This is a distance of approximately 800 metres there and back.
22nd September 2020, following a poor night, Baldy continued to have a very poor day. He was unable to pass urine, he had uncontrolled shaking, vomiting coughing up buckets of ‘snot’ and very poor breathing. We have a little finger clip device for taking blood oxygen readings. Despite, copious use of the ventolin inhaler and frequent use of the nebuliser Baldy's oxygen levels were not increasing above 90%. I phoned the GP Surgery and spoke with Dr Xxxxxxxxx who had previously supported Baldy to remain at home when he had covid (?) and pneumonia. Dr Xxxxxxxxx prescribed antibiotics and steroids. As the day went on Baldy began to feel frightened. This is very unusual. He is extremely pragmatic and not prone to panic.
Dr Xxxxxxxxx asked about his ‘cough’. I appreciate that the current global situation and associated covid protocols bring ‘coughs’ into sharp focus - there are many reasons a person might cough, COPD, allergies, asthma, bronchiectasis, pneumonia, chest infection, etc... Baldy was so frightened that he actually asked to be transferred to hospital. The lowest we are used to seeing his oxygen levels is 88%. He was 86% when Dr Xxxxxxxxx referred him into Xxxxxx Xxxxxxx. This was at about 6pm.
I explained that Baldy was too poorly for me to be able to get him out of bed and into our wheelchair accessible vehicle. She arranged for an ambulance to transfer him. At 11pm I called the ambulance service to check they had Baldy on their system. They did. I was advised that if he deteriorated further to call in on 999. By 1am his oxygen was 82% and he was vomiting profusely. He hadn’t eaten all day due to nausea and vomiting. He was still unable to urinate and was still shaking uncontrollably. I called 999. Paramedics arrived within 20 minutes. They knew nothing about Baldy or what was going on for him. Despite this lack of communication, they were great. I do not want to quote people incorrectly but I’m pretty certain one of the paramedics mentioned a risk of potential sepsis.
Baldy was loaded into the ambulance and given oxygen. The paramedic explained that it isn’t possible to take wheelchairs in ambulances due to the lack of any means to secure them. This would cost £50 to £100 to resolve. I can only assume that wheelchair users are discriminated against in this way because the disabled community are low status members of society. I am fairly certain that I would not be asked to leave my legs at home.
Dr Xxxxxxxxx requested that Baldy be admitted to Xxxx Ward. On the Xxxxxx Xxxxxxx website Xxxx Ward is listed as Endocrinology and Diabetes. This was a little confusing.
23rd September 2020, my fist phone call was to the MS nurse. I left a message with a member of the team requesting that communication be established with Xxxxxx Xxxxxxx. I then phoned the ward to find out how Baldy was doing. I was told that he wasn’t out of bed. This was a little alarming since his wheelchair was still in his bedroom at home and he had no means of transferring out of bed. Another area of confusion came from the Xxxxxx Xxxxxxx website where a list of criteria was provided explaining which patients would be allowed visitors. Baldy met the criteria. When I asked I was told only ‘end of life’ patients can receive visitors. The website is now down in it’s entirety - 26th September 2020.
I delivered Baldy's wheelchair to Xxxxxx Xxxxxxx. Great that we have a car and I am able to do this.
24th September 2020, Baldy asked me to take his patient turner (standing transfer apparatus) to Xxxxxx Xxxxxxx as he had no means of transferring safely. Staff had done their best but he had felt unsafe.
During Baldy's stay, we managed to facetime a couple of times - thank goodness for technology! He was scared, confused and frustrated that he was unable to remember what he’d been told and was unable to share much information with me. His speech was unclear due to his breathing difficulties.
25th September 2020, Baldy made contact to say he was coming home. I was very surprised as he still appeared extremely unwell. I was able to speak with a doctor. I asked what Baldy's post discharge care plan would look like. What was his diagnosis? Had the CT scan shown anything to suggest bronchiectasis? This is the point at which I discovered that Baldy had been admitted as a ‘covid’ patient and had in fact been on a ‘covid’ ward. The doctor explained that they had only looked for blood clots associated with covid on the CT scan. Also, that, for obvious reasons, it’s not practical to keep patients on the covid ward for longer than 3 days due to the risk of infection. When I had originally learned that Rohan had been swabbed for covid and that it was clear I had assumed this was just current standard practice. For the first time since Baldy's admission I was able to explain the ongoing nature of his respiratory difficulties. This seemed to be new information. The doctor then explained to me that the respiratory ward does not accept transfer of patients from the covid ward. Following this conversation, a respiratory consultant visited Rohan and said that the CT scan showed abnormalities associated with bronchiectasis.
Now that you have this information please can you answer the following questions:
Why was the opportunity for Baldy to be cared for by the respiratory team missed?
The doctor I spoke with informed me that Baldy had achieved a blood oxygen reading of 94% without additional oxygen. This is wonderful news but has not been sustained. By the time Baldy got home he was down to 88%. He has been sent home with oral antibiotics only. The doctor also informed me that false low readings can be given if a person has cold hands. When Baldy's readings are low, which is all the time, I measure my own for comparison. My hands are consistently freezing and my reading is never lower than 99%.
Now that bronchiectasis has been all but confirmed can he be issued with a ‘rescue pack’ as a matter of urgency?
Who would be best placed to coordinate a conversation between neurology and respiratory teams to promote Baldy's safe care moving forwards?
Who would be best placed to chase Baldy's referral to the Sleep Clinic?
We observe good hygiene practices. The kids are well versed in ‘catching’ their coughs and sneezes and wash their hands with almost paranoid frequency. The kids are now absolutely terrified of their dad getting ill. They are both currently wearing masks in their own home to protect their dad. I have agreed with both their schools that they will learn at home to minimise the introduction of germs and bugs into the house until we have a robust plan for Baldy's safe care.
This isn’t ideal. During the first lockdown our daughter’s mental health was very poor due to the combination of a very poorly dad and loss of routines and structure. Both of our kids are neurodiverse so this is a big ask of them.
Fault finding is of no interest to us as a family. We require a plan for Baldy's safe care ASAP and it would be nice to hope that others might have better experiences.
Xxxx ward staff were made aware of my earlier blog. Please ensure they are made aware of this correspondence.
Baldy's observations were that the staff are phenomenal in their care and professionalism. They were all incredible. He would like to give special thanks to nursing assistant Liz.
You are more than welcome to use my blogs as a resource.
All best wishes,