"Hospital Consultant referral for palliative care"

my partner was discharged into palliative care in February 2021, after presenting in June 2019 at doctors and seeing a consultant in December 2019, we were told that treatment would be completed by March 2020. There are on average 12 cases of anal cancer per year in Leicester and that 90% were treated with a successful outcome. Unable to have chemo therapy a course of radiotherapy began in June 2020, numerous cancellations and delays of consultations, assessments and apointments meant that the cancer caused rapid deterioration of the health of my partner, he was unable to walk more than a few steps without excruciating pain, lie on his back or front or sit at all.

On hospital visits (including one that was cancelled by phone that morning when he was upstairs and couldn’t reach the landline and had no mobile and I was at hospital myself from 7.30am until 12 resulting in us attending at great cost to stress and physical health) we were told there was no possibility of having a trolley to take him to wards, consults, appointments resulting in more injury and strain on his anal, rectum areas where his cancer was progressing. After refusing him an operation at The Spires,(more travelling, visits and assessments, more deterioration in health, the consultant decided to operate himself as an emergency at the Royal in Leicester. The operation, including restorative plastic surgery, took place in December 2020. They removed his anus, rectum,  ulcer and tumour  and surgically placed a Stoma bag

8th-14th in hospital, had to return to see consultant weekly more travel more walking, still no trolley to the Jarvis or other wards, still the receptionists and others saying a trolley was not possible, in one case saying it could take upto an hour when the appointment was in 10 minutes. I pointed out red spot where there had been none the week before to the consultant and that the wound, from start of buttocks to back of scrotum was still discharging faecal matter, was told not to worry by nurse unless it turned green. A dressing was placed by the nurse occasionally. This never lasted more than a day.

A biopsy was booked, more travelling, walking to assessment, operation, to hear result. We were told nothing more could bedone and my partner was discharged to the GP for palliative care. we were told by the consultant that a doctor would attend and a nurse would come every day. He was to continue with morphine  and the pain management team would possibly be able to control the pain so he might be able to sit eventually. No timeline was given, though it was suggested upto 5 years might be possible if the cancer did not spread further, but it had recurred. The nurse said the consultant might be out of touch with home provision now Covid altered everything.

.  The Stoma nurses had been in contact and shown my partner how to replace his Stoma bag, not shown me, even though he was on morphine patches and was to increase dosage of oral morphine. I am bi polar, controlled by medication, have arthritis and foot problems. We are both 71.  

Feb23/21 he was referred back to GP, with bigger and more widespread unhealed wound. All his follow up consultations with the plastic surgeon were cancelled because of Covid, and when we were offered an appointment he was too ill to travel and had been referred back to Gp. A district nurse attended, due Monday. 4pm (I can’t remember if it was then or Wednesday) she had been told to dress a wound, no more information, the dressing wasn’t big enough to cover the whole wound and the discharge had increased. My partner complained that the pain was unbearable and asked me to take off the plaster dressing the next day, it was soiled and dripping. Another district nurse came on Sunday afternoon the 7th asked if he wanted a dressing, when he said no because it hurt too much she took a photo of the top of the wound and said she would come round next Friday as he could only get daily visits for wound dressing.

Meantime we had a phone call from Macmillan's to tell us that the person responsible for assessing referrals was unavailable so no one could deal with us now, but we could expect a call from them on Monday 1st March. The call came and we were asked about his pain relief and told to note down the amount and time of his oral morphine medication so she had a better idea of dosage. We were both annoyed that other questions we had were not heard, it seemed to be a closed phone call. My partner only having gone out to hospital since November 2019 in pain, being deaf in one ear and having the other filling up with wax and his eyesight needing another eye test and glasses as he could no longer see the TV was told he must try to find people to come out to see him himself. We both wanted a Macmillan nurse to inspect and advise on his difficulties.

The follow up call on Thursday never happened, or at least no message was left on the machine. We had a hospital bed arrive on Tuesday 9th March that we couldn’t adjust ourselves, but wait until the district nurse came next to adjust. The air mattress was too hard for my partner who was developing pressure sores on hips, elbows and knees from being on his side for the past year and more, he had to suffer some more. That Tuesday his Stoma Bag burst in bed, he is a very private person and  did his bag himself and I cleaned the mess everywhere else.  Wednesday and Thursday he had fallen from the bed twice as he leaned forward to ease the pressure, was clammy on his forehead  and when he was sick I got the doctor to call, who sent him straight to AandE. he has been kept in, with no visitors, after we had hoped to enjoy every moment left of being together.

Because of the stress and the experience of waiting constantly for the next appointment/treatment over the last 20 months I am pleased that my daughter and sister who live in Leicester have been supporting me by providing transport to the hospital for my partner and to my own appointments. My foot problems make life difficult. I can’t get up without assistance myself when I kneel,  and find it difficult to bend to pick up dropped items, or to clean the floor properly, or to climb stairs, often 12 or more times a day checking on my partner,  going to the bathroom with him, 

taking him medication and food. Plus I am exhausted every day just cooking, cleaning and shifting furniture,  we have a 3story house with steps front and back. I haven’t been able to get a doctors appointment for myself often and when I do it’s  1 patient I  problem (and I Have Many)

I appreciate that the NHS and Charities have suffered greatly in the last decade or more by the evil and inhumane funding cuts by the government, as well as Covid being mismanaged by the inept and incompetent, wasting billions mainly on cronyism and business interests. The dismantling of the NHS and Education systematically has caused lots of (perhaps) unintended consequences, but the price being paid in blood and suffering cannot be compensated for by the incredible service being shown by our overworked underpaid or not paid in the face of such calamity. It is unfair. Everyone I have met in the health service has impressed by their dedication, kindness, empathy (except for their ignorance about anal cancer) and care. The break down between services seems again deliberate government policy.

Anyway I am back waiting, in seclusion, with limited IT skills and no mobile, a State pensioner, there are many more just like me, waiting sometimes with no hope of relief or any hope. Thanks to the work Macmillans  try to do it is bearable.