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My experience of Macmillan support

redwood99
Posted by

I wanted to share my experience of Macmillan support over the last eight weeks of my Mum's cancer journey.

In June my Mum went to her GP after seeing blood in her urine.  Prior to that she’d been fit, independent and had never been in hospital.  In mid-July I sat alongside her as she was told she had aggressive metastatic bladder cancer, ‘the worst kind of cancer’ as her consultant described it to us. 

At this point we were plunged into a world that we knew nothing about. Neither me or Mum knew nothing about cancer, it’s symptoms or the care system that was there to support us. 

I spoke to colleagues at work and read as much as I could.  One consistent theme was people’s positive experience with Macmillan; that Macmillan nurses had in their experience been the ‘one thing that made the difference to them’, a ‘friendly ear that they could call on throughout the process’, a ‘constant source of support’.  A friend of mine recently shaved her hair off to raise money for Macmillan because of the support they’d provided to her family.

Shortly before being discharged from hospital on 23rd June, Mum was visited in hospital by a Macmillan nurse.  She told us that Mum had been referred to the community Macmillan team.

Less than 48 hours from being discharged, Mum was complaining of intense pain.  I called 111 and Mum was taken back into hospital.

The twenty days that followed were terrible.  At one point her consultant told us her death was imminent.  She was however, discharged again on 15th August following an assessment that she was Ok to go back to living alone with some ‘reablement’ care visitors.  To my knowledge, no-one from Macmillan spoke to my Mum while she was in hospital during those twenty days and no-one spoke to me.

The next twelve days were the worst days I’d had in my life.  I was unable to leave Mum’s home for virtually the whole period.  I was trying to work at the same time as dealing with Mum being in pain, suffering with anxiety and panic attacks and needing me to sort out physical care issues.  The care visitors themselves were saying ‘Your Mum needs palliative care’ and ‘is she getting support from Macmillan?’. 

I phoned in to work to say that I was unable to get in as I was having to help Mum.  ‘Are you getting help from Macmillan nurses?’ they asked.  ‘As far I know we’ve been referred’ I replied

As the twelve days went on, the situation got worse.  I was a son having to lift his Mum off her bed and onto her commode and then clean her up afterwards, something I had no idea how to do safely or correctly.  No-one came to help. I was completely out of my depth.

Late on the 26th August, following a 111 call I’d made in desperation, an out of hours GP visited us.  He asked me what care Mum was getting and whether she was receiving palliative care and whether Macmillan were supporting us.  I told him that as far as I knew we’d been referred to Macmillan.  He said our care situation wasn’t right and that we needed palliative care, not reablement support.

Later that night, emergency response nurses came to apply a morphine injection.  Afterwards, they sat me down and said ‘The situation here clearly isn’t right and you’ve been left on your own to try and care for your Mum, but don’t worry now; we’ve got this.  We’re referred you to Macmillan, ‘Hospice in the home’ and the district nurse palliative team.  You’ll see all this kick in tomorrow and everything will suddenly seem a lot better’.  I thanked her and then broke down in tears.  I sat with Mum all night trying to comfort her saying ‘don’t worry Mum, the Macmillan people are coming tomorrow’.

Nobody from Macmillan came. 

Later that morning a district nurse came along with a GP who had a scheduled visit.  The nurse took one look at Mum, phoned an ambulance and Mum got taken into hospital.  The GP said ‘something’s clearly gone wrong here’.

After the ambulance had left, I realised I hadn't slept for over 50 hours.  I was signed off work with nervous exhaustion, having never been signed off or had any mental health issues prior to that.  My wife called the Macmillan nurse at the hospital to see if anyone could help us; the nurse was helpful but referred us again to the community Macmillan nurse.  She rang us back a few days later but didn't really offer any help implying that they were stretched and couldn't help everyone.

For the next three weeks, Mum was back in hospital and I visited her every day.  She showed signs of improvement, only then to be followed by another drop.  I didn't know if this was an infection or the cancer?  Is she dying now or is this a temporary setback?  How were they treating her?  I had a million questions but no-one to answer them and was really worried about Mum just being discharged again and getting back into the situation we’d been in. 

The hospital phoned me on 9th September and said they were trying to get Mum into a hospice so she could get the right palliative care.  A week later that still hadn’t happened.  On 16th September the hospital called me to say that Mum had passed away.  Her cause of death was ‘metastatic cancer of the bladder’. 

That was the last contact I’ve had from anyone in the healthcare system.  I’ve still had no contact from anyone in Macmillan. I still haven’t really rationalised what’s happened in the last eight weeks other than my Mum suffered horribly and now she’s gone. 

So that was my experience.  I’m genuinely happy for people who received help from people at Macmillan and having gone through what we did, I can totally appreciate what a difference that will have made to them.  I would love to be recounting the same experience and to be publicly talking about the positive difference they’d made to us.  The truth is, we received virtually nothing from Macmillan throughout the last eight weeks when me, and way more importantly my Mum, were going through hell.  Maybe we weren’t the right type of people that get Macmillan support.  Maybe Mum didn’t have the right type of cancer.  Maybe we did something wrong.  I honestly don’t know.

It’s all academic now really, as Mum’s gone.  To be honest I don’t even really know why I’ve written all this.  It’s not anyone in Macmillan’s fault that Mum had cancer.  I suppose if anything, I just don’t want other people to go into this like I did assuming that there would be some kind of arm around their shoulder when, at least for us, there wasn't.

Dreamthief
Posted by

Morning

So sorry to read this, it isn't as we would expect from Macmillan either :-/

Sounds like a massive communication breakdown somewhere along the line.

Maybe nobody was informed your mum was back in hospital, or when she was discharged to go back home after her pain issues

I have 'flagged' this with admin who will hopefully get back to you with a reply tomorrow morning.

Sincere sympathy for the situation you have been through and the loss of your mum.

Always sad when patients and relatives through no fault of their own just seem to be let down at every hurdle.

Take care, G n' J

papermoon
Posted by

In so sorry to read your story and what you went through with your mum virtually unaided. You must feel so let down and it's bad enough to have lost your mum without going through all that. It's a very similar story to my brother who died on the 18th August. He was rushed into a&e end of May with what turned out to be stage 4 cancer. He lived alone and wanted to stay in his own home for as long as possible. Fortunately his eldest son and wife lived fairly near to look after him but although he was promised an end of care package and Macmillan nurse nothing happened despite our numerous phone calls. After another hospital admission I spoke to the consultant and said he can't go home again without help. Well all he got was one visit from a Mac nurse and a table on wheels to go over the bed. It was a disgrace and put him and whole family through unnecessary suffering. In the end we got him into a hospice but it completely destroyed our faith in the system, I can only assume the the burden on these services is too much and they just don't have the resources to cope because of all the nhs setbacks. 

Jimmy - Macmillan
Posted by

Hi all,

 - I'm so sorry to learn about the passing of your mum, please accept my deepest sympathies. I'm also sorry to read about the support, or rather lack of support your mum appeared to receive from ourselves - I appreciate this must've been incredibly frustrating for yourself, and it evidently took its toll on you having read your account. Would you like to send me an email at community@macmillan.org.uk? If you'd like to give me a few more details as to your mum's name, where she was treated etc., I'd be happy to run all this past our Feedback team for you.

 - I'm sorry to read about the lack of support your brother received from Macmillan too. The above goes for yourself as well - send an email to community@macmillan.org.uk if you'd like your concerns addressing further.

Best wishes,

Jimmy

Community Team