Newbie-ish

New to Carers Connect
1

Hello, I’m Martha.


I have lurked for some time on this forum.
I mostly post on Twitter about carer issues, mental health & NHS stuff, & frequently respond to the @CarersUK tweets. Maybe the odd photo of something that has caught my eye will be tweeted.

About me - I became a only-child Carer at 14 years old for my mum when she suffered a catastrophic breakdown, she went on to have severe, enduring mental health problems & eventually Vascular Dementia until she died in a house fire a few years ago.

At times, I also cared for my father & grandfather in the last years of their lives. I now have an ongoing caring role for my partner who has an autoimmune condition.

So, I have had a somewhat checkered & complex journey as a Carer over many years - as a young Carer, Carer for many (juggle juggle juggle), Carer for someone with Dementia, & all the while working full time as a working Carer.

Something had to give - that was my mental health & wellbeing. Lack of sleep, decades of caring & holding down a full-time demanding role all took their toll.

To make sense of my experiences, to have a sense of purpose & to make things better for carers, I am a Trustee of Carers UK (very proud) elected Carer Patient Governor at an NHS Trust (again, very proud) & on both boards, I speak up for carers & influence for improvement of the carer experience.

So that’s me.
I should mention that cackling in the face of adversity is a valuable life skill that I cultivate :grinning:.

2

Hi Martha … welcome to an extremely quiet forum as I type.

A CUK TRUSTEE ?

First in my memory to visit us mere proles on the forum !
( Should we doff our caps ? Roll out the red carpet ? Dust off the best china , once reclaimed from the local pawnbroker ? :imp: )

So many questions that could be asked … but I won’t.

NHS as well ?

I won’t mention hospital discharges , then … or CHC / NHS Continuing Healthcare ?

How can we best " Re-educate " you as to real life in CarerLand … from the street level … given 4 million or so are trying to
balance the Unholy Trinity on a daily basis … eat / heat / roof ?

Feel free to let us have your perceptions from your position within the supporting " Circus. "

3

Hi Chris,

Pretty sure other Trustees are on the forum, possibly under cover :wink:.
CUTs are current or recent carers, & I keep meaning to tot up how many years (or tears as predictive text would have it) of caring we have between us. They’re a good bunch who bring sensible stuff to the Board table.

So no fuss, mug of tea is always welcome.

Yes, NHS as well, in my first term.
Hospital discharges very thorny issue still.
Non Urgent patient transport challenging.
Continuous healthcare…you said what?

‘From a Carer perspective…’ is my given name in meetings, I am both relentless & horribly nice about bringing carers to the Board’s attention.
Slowly, slowly, the tide is turning as my fellow Governors are singing from the same song sheet as they now feel less isolated about being carers & starting to speak up. So it’s not just me.

I’ll keep browsing the forum & will chip in when I have something to offer.
Every now & then, I’d like to ask the forum what their NHS experience has been – totally informal just to broaden my perspective. I am only human, no special magic powers and cannot build a shed, let alone Rome in a day.

M

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Thanks Martha.

For my part , I give " A voice " to the low millions surving below the official poverty line , both through the news section , and in replying to whatever CUK itself announces to " Ease their plight " … Fairer for Carers says it all !!!

The Unholy Trinity … eat / heat / roof … the highest of the high on my daily agenda.

I also work , unofficially , as an advisor to our local foodbank … zero hour contacts / UC an enforced speciality !

__

Every now & then, I’d like to ask the forum what their NHS experience has been – totally informal just to broaden my perspective.

A little difficult as almost all posts / threads relate to BAD experiences … hardly any will mention GOOD ones.

From the NHS angle , two threads to get your gnashers into … HOSPITAL DISCHARGES and CHC ( Rationing ):

https://www.carersuk.org/forum/support-and-advice/all-about-caring/please-tell-us-about-your-experiences-of-hospital-discharge-31980?hilit=chc%20rationing\

https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-rationed-high-time-to-ask-some-obvious-questions-33311?hilit=chc%20rationing

Hospital discharges … the DUMPSTER thread as above … as in dumping unfit carees back on family / kinship carers.

Takes up a lot of our time answering posts on this forum … the word UNSAFE is far too common.

A thread started by CUK and … left to rot ???
CHC ?

At one time , pretty popular amongst threads. To save everyone time and effort , I created the CHC main thread which does
appear to have been useful to many … number of queries / questions dropped off considerably :

https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-coughlan-grogan-judgements-pointon-ruling-nhs-contuing-healthcare-nhs-fnc-hospital-discharges-all-here-35998

Pleased to hear that the trustees are being dragged into the 20th. century … a few more years and perhaps the 21st. ???

Trustees incognito ?

Nothing new , several " Interesting " observers joined us on CarerWatch a decade ago … 2 mps to my knowledge alone.

( The handle WILLIAM GLADSTONE was a dead give away ! )

If any are reading this exchange , and several other forum postings , no wonder you remain incognito ?

You need more than a tin hat and a can of bully beef to survive in Carerland in 2019 !!!
( A mug of tea ? I suspect you’ll want a fresh tea bag as well ? )