"My Mums Cancer journey"

3 years ago, my mum (75yrs old) was diagnosed with lung cancer. Fortunately, it was operable and a course of chemo recommended. My mum took a really bad reaction to the chemo and was taken in to the Beatson. It was suggested that she didn't have to continue the treatment if she didn't want to. The operation was deemed successful so she stopped treatment. There after there were 6 monthly check-ups - lung x-rays and meetings with the consultant where we were told all clear. Despite it being a terrible and traumatic time we felt we were kept informed and all communication was helpful and respectful.

Around April this year (2019) we started to notice my mum’s behaviour change, more forgetful, zoning out, lack of concentration and awareness, loss of appetite no drinking or going to the toilet. We feared dementia and dehydration and eventually we made an appointment with her GP and I attended with her having spoken to the receptionist to explain the reason.

It was the same GP that had initially arranged the chest x-ray 3yrs ago so was familiar with my mums’ case. At the appointment in Aug we explained all the symptoms, the GP mainly asked if my mum was feeling depressed but arranged a chest x-ray, bloods & urine. Previously my mum had mentioned headaches to the GP and was called about a CT scan, this was not discussed with the GP at the appointment I attended. The CT scan appointment was one month later than the original GP appointment. In the meantime, my mum had a fall and couldn't move, a GP made a house call and made arrangements for a Nurse visit for an assessment. My mum then got a phone call to go to the Victoria Hospital and meet with her cancer consultant - the next day. She was due a check-up in a few weeks but had also just had a chest x-ray organised by the GP. As my sisters and I had to take time off work and as my mum was still confused a lot, we assumed this was a mistake and perhaps it was the nurse visit. My sister tried calling the health centre to check with the nurse but didn't get it resolved. The Victoria called my mum again asking why she missed the appointment and could she come in the next day.

Again, this was too short notice for us to arrange, the hospital is not near or a journey my mum could make alone - considering her current condition. My sister called the consultant at the Victoria and was told it was to get the CT scan results.

In early Oct, my mums GP made a house call and informed my mum that the scan confirmed she had secondary brain mets. She told her alone in private, even though my dad was in the other room. She left without having any conversation with my dad. My sister visited after work to re-arrange the Victoria appointment to find my mum 'catatonic/delirious' barely able to move or communicate and barely registering who my sister was. My sister called the GP who advised her to come to the surgery to collect a letter and that she would arrange a one-hour ambulance service to take Mum to A&E @ QEUH.

By the time I arrived we had managed to get my mum to eat and drink a little but she was still pretty out of it. We waited 2 hours for the ambulance and when we called, we were told it was a very busy night and if we could make our own way there, we should. My Mum could barely walk but we managed to get her there and I passed the letter to the A&E reception - to someone who barely acknowledged me - and we were told to wait. We waited from around 9pm till after 3 in the morning. By the time my mum was taken in for assessment she had come round and was a bit more present that was when we were informed of her secondary brain cancer. After several more hours my mum was admitted and kept in the QEUH for a week and a half. Each time we visited we didn't see a Doctor no one said why they were keeping her in, we were visiting and asking daily. On the morning rounds one Doctor informed my Mum that there was no treatment, they could only treat the symptoms and there was no real medical reason for her to be in hospital. And then left her on her own. A nurse called and we all attended as soon as we could but again no sign of a Doctor. When we demanded to have a conversation with someone the Ward nurse came and explained her condition but not much more. She was given steroids to help with the swelling. A visit from the palliative care team and physio was arranged. We then managed to meet with a Doctor and we asked why Mum had been told devastating news - twice - without any family in attendance and we were informed that my mum knew her name DoB and what day it was and that was sufficient for competence regardless of the fact that she was struggling to take in such information, the serious of it and being on her own. We were visiting daily from about 11am till 8pm.

While in hospital my mums feet swelled excessively, causing problems with her mobility we asked about this several times, we were told it was because she was stationary too much. There were still issues with hydration & urinating but we got no real answers with that either, although her appetite had increased due to the steroids. Doctors then only came in to ask my mum about resuscitation - again when she was on her own despite my Mum and all of us asking to be included in any difficult and upsetting conversations. Now at home there is home care in place to check on her medication and dressing etc if required, although the second weeks blister pack was in correct. My mums feet have continued to be an issue and I called my Mum's GP to discuss the error in meds and her feet. The GP made a house call, didn't even look or ask about her feet but did ask my Mum again to confirm a DNR. We now have it confirmed that mum contracted cellulitis while in hospital she remains in a lot of pain and fairly immobile.

We are very disappointed with the way my mum’s diagnosis has been handled and communicated to her and us. As a family we a have attended every appointment with my mum.

We are frustrated that we were never advised that secondary cancer could occur or info on symptoms to be aware of - which may have made us get mum to the doctor sooner. If this is a possible outcome why is a CT scan not part of the check-ups.

We are appalled that a 78 yr old with multiple brain tumours - as my mum was told in 'passing' while alone, again, before she left the hospital - would be called and told to get herself to a hospital some distance away, not once but twice, at short notice with no suggestion that she may want to have her family with her.

We are also appalled that the GP decided to give my mum this diagnosis when she was alone and not inform my dad, or even my sister and then send us to an overburdened A&E with no info, no knowledge of what was wrong, or what we were going to A&E for, and sending us with a letter we had assumed would have admitted her more quickly - no advice, no consideration, no real discussion of what was best for my mum at that time - a night in bed would have been better than sitting in the ER. Perhaps GPs should consider all the implications of sending the elderly to an over burdened A&E late in the evening

That the Doctors on the ward made no attempt to have a fuller conversation on my mums condition with her family present, and when 'forced' to seemed a little irritated and conceited and still had or advice on what as a family we would now face with my mums condition. It was apparent that their main concern was getting the do not resuscitate in place.

In early December my Mum was rushed by to A&E again due to a seizure – same symptoms as before non-responsive, immobile etc. She had a severe infection; her feet were also badly swollen and dark red, they were not sure what caused the seizure or the infection. Again, we have struggled to see doctors or get clear consistent information, they keep telling my mum all the information but my mum does not have the capacity to remember or communicate with us. On one occasion an oncologist came in to explain they were prescribing a pill to help prevent the seizures – I asked why that hadn’t been prescribed after the that time to be told that there was nothing on her record from the last visit about a seizure. My mum continued to be in hospital mainly due to mobility, she also has steroid induced diabetes -we learned this from a nurse by 'luck' – something else we were not advised to be aware of. There was no clear ‘lead’ person to keep us informed, my mum couldn't remember if she had seen doctors or not, and no clear advice of how to manage or improve her issues. We had to chase her dinner as she wasn’t fed, we  had to ask for her to be washed, which didn’t happen and my sister had to do it, we had to ask for the bandages on her feet to be changed as they were soaked though.

We as a family are trying to do everything, we can for our mum but feel there has been a real lack of information, there is no clear path or continuity of support as it always seems to be another department. Also strongly believe Doctors should ensure families wherever possible are included when difficult and upsetting information has to be shared.