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MacMillan Fund Raising – Not in Janice’s Name.

Most of us have their favourite charities which are deserving of our support, fundraising for much needed funds, bringing communities together, meeting new people and hearing their stories.  You will be quite rightly proud of what you’re doing and achieving with your contribution to society and your charity of choice.

What saddens me is the disrespect that has been shown to my late wife Janice’s memory, from those who know what she experienced with MacMillan.  MacMillan nurses lack of care, not acting as a patient advocate, unsupportive, leaving her scared and vulnerable, Janice made a conscious decision during treatment and at end of life care to never fundraise for this sham of an organisation.

Janice wasn’t hard work, wasn’t high maintenance or needy, but when she needed help, boy did she need help.

Her chosen charities of choice are Cancer Research UK and the local Hospice, so if you are in the fundraising spirit in Janice’s name then these are Cancer related charities she supported.

Isn’t that a bit mean spirited of you Jason? People make an effort to put on coffee mornings, brave the shave, runs etc?

Absolutely not…

The MacMillan TV adverts show caring nurses looking after patients dealing with probably their most traumatic news they’ve had in life, taking care of them, giving advice and comfort to patient and partner etc.  It all looks amazing and pulls at your heartstrings, cleverly designed to generate the most contributions it can.

The reality of the MacMillan Experience however was very much different.  An isolated case I hear you cry… Sadly … NO, over the last couple of years I’ve met and spoken to many of the widowed community across the UK, a high percentage of which had very poor experience falling short of MacMillans TV advert, but more importantly didn’t provide adequate support and care for their loved ones too.  

In balance there are some widowed folk that have had a positive experience and that is great news, however it does seem very much a post-code lottery for the support and indeed the funding that MacMillan provide, which surprises me given the amount of funds raised annually by the charity, £252.7m in 2017 and £235.7m in 2018

Click to access macmillan-2018-annual-report-and-accounts_tcm9-354056.pdf

Janice had a high pain threshold so when she was in pain you knew she was in pain.  The out of hours GP attended again around 2am, did what he could but strongly recommended she requested a scan and he would back that up in his report.

We went to see the consultant of which his juniors were present and the MacMillan nurse.  Janice explained what was going on, Lower back pain, numbness/loss of sensation spreading down her legs, something else and very much reduced mobility.  To all health professionals I was later told these are “Red Flags”

Janice explained what the GP had requested.  The MacMillan nurse said and I quote…

“There are more patients than you that need a scan, like car crash victims, what makes you think you can have a scan, one was done a month ago and it was clear”

That scan wasn’t on her lungs not her lower back.

I said it was inappropriate and she should be supporting her patient, the issue may be one of demand and capacity planning, but that is a Multi-Discipline Team discussion about priorities.

Janice felt absolutely deflated, that the hospital had given up on her and not taking her pain seriously.

I paid for private MRI’s and CT, which happened same week, and guess what? They found two large tumours causing impending spinal cord compression which explained the amount of pain she was in and required emergency treatment.

If the MacMillan nurse had her way Janice would have been left in severe pain for much longer.

This theme continued with the nurse, after radiotherapy on the tumours, her condition deteriorated, the nurse said well you have to expect some pain.  Janice was screaming the house down and had no mobility at all. We later found out that they should have admitted her at the point of radio therapy…

The MacMillan Nurse again unsupportive, meant another escalation, and guess what? The tumour had collapsed the vertebrae which meant her spinal cord was crushed.

These are just two examples of the MacMillan team’s behaviour (and not the worst), I could provide more, like being told you’re stage 4 and disappearing straight away without any support.

I also found out that the MacMillan nurse falsified her non-contemporaneous notes, of course today it’s my word against the trust.

We both complained at the time, and later on I followed up that complaint, the hospital was unsurprisingly very defensive, but that’s a story for another day.

You could argue that this was one bad egg, but again evidence is out there to demonstrate these aren’t isolated incidents but something very rotten is at the core values of the MacMillan name.

We discovered that due to lack of funding, counselling/psychotherapy was unavailable at our hospital trust.  As for spouses/partners absolutely nothing available what so ever.

Now this seems odd given MacMillan do fundraise for the country and not on a county by county basis so there should be a central fund available to all…

On complaining to MacMillan and their lack of standards, follow up, patient care I was informed the following (after being initially told it’s not up them): –

MacMillan provide funding for between 3-5 years to each trust to pay for a MacMillan nurse, after that period the trust has to provide their own funding for the position.

The MacMillan nurse is governed by the trust and there’s no control over their conduct from MacMillan.

A satisfactory answer wasn’t provided on why some areas lacked basic care and facilities/funding whereas others had funding for more services.

I was advised by the MacMillan nurse it wasn’t in our interests to complain, and she was right as she falsified notes.

I do think MacMillan need to be held accountable for staff wearing the MacMillan uniform, branding and meet a level of code of conduct in addition to existing nursing standards.

Finally, once a patient has reached end of life.  All communication is dropped.  There’s nothing from MacMillan, zero support, guidance on what to do or offer of therapy, counselling etc.  It feels very cold.  You’ve lost your wife, who are you again?!?

At a respectable point there should be feedback to MacMillan and not just the trust to ensure ongoing quality and reputation is maintained.  There are many areas of improvement that can be made with little to no extra funding required if only they would be prepared to listen.

Finally, this is not to dissuade you from raising funds for your favourite charity, those are your beliefs and experiences.  But should you be raising funds for this uncaring practice; all I ask is that you don’t dishonour Janice’s name by raising MacMillan funds in her name as she would be livid and very disrespectful.

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