Cancer

If you read some of the same blogs as me, you may have seen THIS blog post over on Mums The Word. I always find things related to cancer quite difficult these days since losing my Dad in January 2009, just 3 weeks before my little boy was born. The thing is, although my Dad had cancer, and it is probably what caused his death, it is a bit more complicated than that. No one outside the 7 of us who were at his side will ever really understand the impact of what transpired over those 5 days awful days back in January 2009.  Sometimes though, I want people to know what happened so that if they ever find themselves in the same situation they may have a moment of clarity, and say STOP. I often wonder if we could have done more for my Dad, but at the time, things were so confusing and for my own part, I was very heavily pregnant and struggling with my own health.

You will find below, a copy of the complaint letter I submitted to the hospital trust. I wrote the letter on behalf of my mother who was obviously my Dad's next of kin. My mother was unable to write about it herself, although she desperately wanted someone to 'DO' something.

If you read further, you may find some of the details in this letter upsetting. I don't want to damage the NHS, I want it to get better. I believe in free health care for everyone, I believe that more should be done to help get our ailing system off its backside, I believe my beloved Dad was entitled to better care than he received.

 

 

Complaints Manager
Complaints Team
xxxxxxxxx Hospital
xxxxxx
xxx xxx


Dear Sir/Madam

Re: Thomas xxxxxx (DoB xx/xx/1947)

My father, Thomas xxxxxx, passed away on 8 January 2009 in Ward 12 at xxxxxxxxx Hospital. I find I can’t begin to come to terms with his death because of the many issues surrounding his care in Wards 8 and 12 prior to his death. Although it’s too late to help my father my family and I would not wish another family be put through the same trauma and distress that we have suffered and are still suffering, and I hope by writing this letter the failings in his care will be acknowledged and acted upon.

WARD 8

On 16 October 2008 Dad underwent surgery for what he had been told were two hernias. Post surgery he was informed there had been a problem with the bowel, which had attached to the pubic bone, possibly the result of adhesions acquired after the radiotherapy he had received 15 years previously.

There was an improvement in Dad’s postoperative recovery over the first few days but then he began to vomit, his overall condition declined and it was found that he had “acquired” an infection in the wound. The surgeon instructed that dressings be changed twice a day but discrepancies in the care of the wound arose when the senior nurse (Fiona) told Dad that while some of the nursing staff felt that the wound should be dressed twice a day, others felt that once a day was sufficient. She said that the difference of opinion was because of the “wetness” of the wound and the problems in healing if it was washed out too often. At this stage Dad was very upset by these inconsistencies in his care and in the unprofessional manner of the staff, all of which made him feel confused and very vulnerable.

To add to the difficult situation Dad found himself in, he then had to witness the obvious distaste of some of the nurses who openly showed that they found the wound very difficult to dress, causing him to feel “dirty” and distressed. On one occasion, after having a shower, he was asked to place a pad over the wound and wait with a towel covering him so that his dressing could be done. While still holding the pad to his wound he waited for 4 hours and asked several times for assistance from the nursing staff. The senior nurse (Fiona) was sitting at the nursing station reading a magazine, and said that she would get the next shift to see to it. Again Dad felt let down by the lack of professionalism of the staff at a time when he was in great need of care and assistance.

It was decided that a VAC pump should be fitted to help the wound heal and this took several days to arrange. Meanwhile a doctor informed Dad and my mother, that the follow up care for the cancer could not be arranged until the wound had healed. Until this point no one had informed us that cancer was present, or had been removed during surgery.

The VAC pump arrived but Dad’s discharge from hospital depended on his General Practice being prepared to fund it. The funding was granted but none of the staff in the Practice had been trained in its use therefore he had to journey to xxxxxxxxx every 2 – 3 days to have the pump canister changed. This was an added worry as he had a very deep, open wound and was on strong medication to control the pain, and therefore not in any position to be travelling to xxxxxxxxx for treatment.

The VAC pump developed problems several times and in desperation Dad telephoned the people who supplied the equipment to ask advice. The woman who manned the telephone help line could hear from the sound it was making that the pump was not running correctly. She asked Dad to run through the procedure that the nurses at xxxxxxxxx used to change it and it became apparent that they had been fitting it incorrectly, causing it to strain hard and run out of battery power too soon, thus producing blockages. Inevitably, this had resulted in Dad having to make more trips to hospital than was necessary.

On one of the occasions the pump was causing problems he became very anxious to relieve the situation and telephoned Ward 8 to say he could be there in 30 minutes to have the pump changed. However, the nurse told him to leave it for an hour as the staff tea breaks were in progress. Again, he felt very upset and vulnerable, and when he finally arrived at the ward the staff kept him waiting a further 1½ hours before he was seen. They even had a patient get out of bed to make way for Dad as they said there was nowhere else available to deal with his wound.

Before Christmas Dad and Mum were seen by Dr xxxxxxx, the cancer specialist. She told them she was confident all of the cancer had been removed and that chemotherapy would be commenced as a “mop up” to eradicate any microscopic traces. When they left her office she placed her hand on Dad’s shoulder and said, “Well, we gave you 15 years since the last time, let’s try and give you another 15”.

On Sunday 28th December the pain was so severe my  brother in law drove Dad to an out of hours doctor who said that he didn’t want to step into Dad’s care and advised him to go to hospital, which he did. After assessment by several doctors he was given Diclofenac. One of the doctors read Dad’s hospital notes and informed him that the bone scan carried out prior to Christmas had been clear of cancer. This news was welcome. The first session of chemotherapy was given overnight on 29/30th Decemberin xxxxxxxxx.
By Sunday, 4th January Dad was at home and had lost the feeling in his left leg. The district nurses who called daily were concerned enough to call in a GP, who advised Dad to go to hospital. As he was due to have the second chemotherapy session the following day he asked if he could stay at home until then. The GP agreed, however the district nurses called in later in the day and advised that the condition of Dad’s leg was deteriorating and he should go to hospital. He did so.

WARD 12

After the admission procedure to Ward 12 a doctor told Dad that he had developed a thrombosis and his leg would have to be removed. The doctor went on to say that Dad still had cancer (not what Dr xxxxxxx had told Dad, and contradicting the bone scan). The doctor then asked to talk to my sister and my mother to explain what was happening. He repeated his statement that Dad still had cancer and said there was a balloon procedure that could be done in an attempt to unblock the thrombosis, however there was not a high chance of it being successful. They decided they would go ahead with it as Dad by now was too weak for surgery. When my sister asked how the leg could be amputated if he was too weak for surgery the doctor said that the leg couldn’t be removed – in spite of the fact that he had just told Dad that the leg had to be removed. They asked what would happen if the leg wasn’t removed and the doctor said they would “make him comfortable”.

On Monday, 5th January, my Mother tried to contact Dr xxxxxxx to clarify the situation regarding the return of the cancer but Dr xxxxxxx was not available. However, her colleague called her back and said that Dr xxxxxxx “could not recall” telling Dad and Mum that she was “confident that all of the cancer had been removed”, or using the term “mop-up”. This caused a great deal of distress for Dad and my Mother as they were very clear on what they had been told that day.

When my sister and I visited our father he was still under the impression that his leg was to be removed and we had to read his nursing notes to him to explain that the balloon procedure was booked in for 2 pm that day, he was still distressed at the thought of having his leg removed that afternoon. The balloon procedure went ahead. In the early evening we were informed it had been unsuccessful.

A doctor from Oncology came to tell us that there appeared to have been “a mix up” and that the cancer had not returned – this was less than 24 hours after being told that it had. The doctor said that the chemotherapy was a follow-up (an essential one) and the leg would have to be removed prior to the chemotherapy. We asked him to repeat this so that we were all clear, which he did.

Another doctor (presumably cardiovascular) then came to see Dad and asked if he could examine him. The doctor asked when the surgery had been carried out to remove the hernia and the cancer, and Dad told him that this operation had been done on 16th October. The doctor remarked that Dad was a remarkable healer and that the wound had healed well. My sister who was standing next to the bed, pointed out that the doctor was examining an old scar – from the removal of his bladder 2 years previously! The more recent wound was covered by a dressing. Is it possible that a consultant can mistake a 2 year old scar for a 3 month old scar?

On Tuesday, 6th January Dad’s condition visibly declined and we were informed he was running a temperature, possibly a sign of infection. It was decided he should have a scan to try to pinpoint the problem as the leg amputation could not go ahead in his current condition. The scan revealed that the bowel (the point at which the cancer had been removed) had tracked to the unhealed wound, effectively creating a channel between the bowel and the wound, causing faecal matter to seep into the wound. The doctor said that the good news was that there were no abscesses or pus pockets, which might have been expected due to the toxicity.

By evening it was decided that Dad be given a triple cocktail of antibiotics and that a stoma nurse would fit a stoma bag to the site to collect the matter, though we were not given a clear time scale for this. Prior to receiving the antibiotics a doctor asked Dad if he could get out of bed so that he could be weighed for a medication dose assessment. However, Dad was highly medicated, still in acute pain due to his wound and had no sensation from the groin down on the left side – certainly in no position to get out of bed.

On Wednesday, 7th January my sisters arrived at Ward 12 to find our father slumped down in bed and unclean, with matter seeping through the bedclothes. They asked several times for a nurse to come but no one came and my sisters were distraught at the dreadful condition our father had been left in. A nurse from the afternoon shift came on duty and was appalled. She apologised for her colleagues, expressing regret at the neglect Dad had suffered at the hands of the nursing staff. When Dad had been cleaned and made more comfortable she explained that there was nothing more they could do for him and that he was to be given palliative care. This was a huge shock as we had been led to believe his treatment was still aggressive. Mum was asked to agree to non-resuscitation if the situation arose but felt she could not do this. The doctor spoke to Dad, who apparently agreed to no aggressive or heroic measures, however no witness from the family was present to verify this

A few hours later the nurse returned and said that things were not as bleak as first thought and it appeared that palliative care was not being planned. A doctor then informed us that Dad was being moved to Ward 22 where they would try to correct the tummy/bowel problems. He could not stay in Ward 12 as this was a vascular ward and the leg was not a priority until the tummy issues were resolved.

My brother and Mother were with Dad when another doctor came into the room and said that he was to go to Ward 22 because he still had cancer. Mum said that he did NOT still have cancer, it had been removed, but the doctor seemed unable to grasp what she was saying. He asked a junior doctor to look through the medical notes again, and the junior doctor asked if he should check the computer system for the results. This was rejected. Mum kept trying to tell the doctor what had happened over the last 2 months but the doctor seemed totally confused. Mum turned to the junior doctor and asked if she was explaining it badly and did he understand what she was trying to express to them (Dad had had cancer which was now gone but needing chemotherapy follow-up), He said that she was explaining it fine and HE understood her perfectly. This was around 8 pm.

Dad’s belongings had been packed up when the nurse, the same nurse who dealt with his personal care, came in and stopped the move. She asked the on-call doctor to see Dad and the doctor agreed that his condition had deteriorated. By now it was around 9 pm.

The oncology doctor came to see Dad and explained there was no treatment for the tummy/bowel problems. I said that we had been told that Dad was being transferred to Ward 22 for treatment. The doctor said he didn’t know what this treatment could be because there was nothing they could do for him. This was when we were finally informed that Dad was not going to survive. The nurse said that they would increase his morphine to ensure he was pain-free. They continued with the morphine and Paracetamol throughout the night and removed his oxygen mask so we could see his face.

A few hours before Dad died a junior doctor looked in and decided his breathing was shallow and put the oxygen mask back on. My family and I were extremely distressed. A nurse came in and removed it again, explaining there was no beneficial reason for it at this end stage and that the doctor should never have put it back on.

On the afternoon of Thursday 8th January my Father passed away. The recorded causes of death were
NECROTISING FASCIITIS
COLO – CUTANEOUS FISTULA
LOCALLY ADVANCED RECURRENT BLADDER CANCER
PRIMARY BLADDER CANCER
The first cause of death on the certificate was necrotising fasciitis – which had never at any point in Dad’s care been mentioned to him or to the family. We would like to know how long he had been suffering from this condition and what preventive methods had been in place and what treatment had been administered for this.

Overall, we feel that the treatment and care Dad received in xxxxxxxxx Hospital during his last months was far below that which we would have expected from a hospital with the resources of xxxxxxxxx. We would hope that this case could be investigated vigorously and all shortcomings rectified so this unfortunate situation will not be inflicted upon any other patient and their family.

I will be waiting to hear from you in the near future regarding your findings and any action you have taken or plan to take to prevent this terrible situation recurring.

Yours sincerely

 

 

Valerie

xxx