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New " National Union Of Carers " Launched : Mandy's Law - Carers UK Forum

New " National Union Of Carers " Launched : Mandy's Law

Share information, support and advice on all aspects of caring.
An interesting one ... established at grass roots level ... shame about the word " National " as it implies some inbuilt mandate to represent carers across the country ... without first consulting carers ... not a very good start ?

However , here's the article ... make of it what you will :

https://www.devonlive.com/news/new-camp ... rt-1361648

New campaign launched for better support for carers in name of Torquay mum.

Mandy's Law needs your signature.

Campaigners lobbying for a better deal for those who care for others in our community are calling for a new law named after a Torquay woman.

The National Union of Carers has been formed in Torquay in order to serve the needs of carers and their families right across the UK.

The initial aim of the National Union of Carers is to try to secure 100,000 signatures for their petition to get ‘Mandy’s Law’ debated in Parliament.

Mandy Bayliffe was a young mum who suffered complications during childbirth including a damaged heart which left her terminally ill.

A union spokesman said ( ? ) : " The turmoil, frustrations and extreme hardships encountered by Mandy, and her carers during this awful experience were described as tremendous. Seeing the stress, trauma and suffering inflicted on her family made her all the more determined to change the way carers and their families were treated. "

"Mandy decided to spend the time she had left rallying around the disabled, their carers and children to campaign for change. Mandy made many achievements towards those changes, but sadly she died before her works were completed.

"She wrote a book about the topic called ‘Shattered Dreams’ before her death aged just 29. All proceeds of which to go support this project.

"Mandy is now the mascot for the National Union of Carers to help carers and their families change their lives for the better."

The aim is to provide a union for carers in order to fight and secure better work and pay conditions for all carers who are exploited by representing their interests at government level; in particular, those caring at home for their sick or disabled loved ones.

The National Union of Carers was formed to fight a political battle to dramatically improve ‘Carers Rights’. It is a Not For Profit company, which enables it to challenge both Local and Central Governments to improve facilities for Carers, young and old by right.

Mandy’s Law is dscribed as a ‘Carers’ Charter’, to try to provide more financial and physical support of carers to help relieve the enormous stress and strains put on their lives.

What would Mandy’s Law entail ?

1. Carers Allowance increase to £95 per week and free from income assessment.

2. Carers in receipt of a State Pension must also qualify for Carers Allowance.

3. Mortgage interest allowance increase up to £300,000.

4. Up to six hours free home care to give carers time to shop and rest.

5. Return community care back into the hands of the NHS.

6. Free prescriptions for all full-time home carers.

7. Free respite care to provide time for carers education and time out.

8. full grants for ex child carers to move on to college / university.

The link to the government petition to debate Mandy’s Law is https://petition.parliament.uk/petitions/213081

For more information, please contact: National Union of Carers, 101 St Marychurch Road, Plainmoor, Torquay, Devon, TQ1 3HL. Email : info@nuc.org.uk. Website : http://www.nuc.org.uk/

There you go ... had me transported back in time to the heady days ( Daze ? ) of Carerwatch ... and the numerous threads and postings on " The Way Forward " ... an Organisation of sorts amongst the possible projects thrown into the cooking pot.

Suffice to say , it will be interesting to see what the Class of 2018 make of this ... without the CarerWatch " Influence ? "

" 8 Aims " ... not bad , Lord Kitch highlights a few of these !

I'll interject when the opportunity arises to resurrect views and opinions expressed over a decade ago.

As a starter for ten , I will assume that this new NUC has some form of hierachy already in place ?

If so , who elected who to do precisely what ... and on what mandate ... do carers join with no say , just a " Rally to OUR cause ? " ... somewhat authoritarian to kick off ?

Any initiative at grass roots level should be encouraged ... ???

Enough from me for now , over to YOU.


Ah , a web site :


CARERS CHARTER SECTION ... 20 stated aims ... compare with our Lord Kitch ?

Managing director ... Terry Bayliffe , husband of the now deceased Mandy Bayliffe.

I will not comment at this stage ... what do YOU make of all this ???
I've just submitted my details. Many of their aims are the same as those I proposed as a motion at a CUK AGM in London FOURTEEN YEARS AGO. The trustees buried it!
Our first forum venture ... no " Gagging " problems with this entity ... a private limited company ... not known , at his early stage , if by guarantee ( Usual way for a campaigning entity ) or registered as a " Charity " with the Charity Commissioners ... a wolf in sheep's clothing conundrum again ?

Be somewhat interesting to learn what's precisely on the inside , BB ... a passive or potential active member able to influence the " Hierachy " directly ... top down / bottom up ?

The Acid Test for ANY organisation purporting to represent carers ... does the tail wag the dog ?
As you know, I used to run a national lorry club, and I've also chaired two registered charities.
In the years I've seen a lot of infighting, squabbles, and breakaway clubs.
It may be that this new carers organisation will have more freedom than CUK in some areas, may work differently, may approach things from a different angle. It may be a complete and utter disaster. Only time will tell, but in the meantime, I'm going to give it a go. My life is dominated by my disabled son but I get NOTHING for all the care I give, I'm even expected to collect him, bring him home, take him back, round trip 60 miles, but get nothing for mileage - costs me £27 each time he comes home just in travel. Am I really worthless???
It may be that this new carers organisation will have more freedom than CUK in some areas, may work differently, may approach things from a different angle. It may be a complete and utter disaster. Only time will tell ...

Precisely !

The chasm from CarerLand to the " Outside World " has never been wider ... has NUC the potential to narrow that gap in the medium term ... 5 - 10 years ?

The obstacles are enormous ... spelt out in full during my CarerWatch days ... somewhat ironic , the largest being APATHY ... the continuing malaise of family carers to look beyond their own problems ... it doesn't need to be that way ... ???

Our Lord Kitch sums up what's wrong ... who out there would take those " Wrongs " onto the national stage ... except for carers themselves acting as one ?

Anger with the way things are is one thing , the challenge of channeling that anger is on a different planet !
Hi Chris

To me as a relatively new carer (less than 10 years under my belt) I think it is a promising start.

I agree with most of their principals and feel grateful for someone else for trying to do something. I get your point about apathy amongst carers. But I also understand where this comes from. I care very deeply about the plight of other carers. I contribute when I can to this forum because of that. But I myself am juggling care for both elderly parents with a CHC appeal, my own young family and a job. I would like to do more, but am only just at times holding it together myself, I feel thankful for Mandy's husband and others like him and yourself for taking a lead. I get that you have been through this before and feel very thankful that you and people like you still care about other carers,

The big thing missing for me from this is the 'oooman rights of carers. My Dad's "human right" to refuse care has cost my Mum her own health. She had no human rights, despite being his unpaid carer for 15 years. I think that there should be something enshrined in law that says those cared for by a loved one are not able to refuse respite care or outside help. The notion of "reasonableness" is well enshrined in the British legal system. Therefore I think this should be applied to those being cared for by volunteer carers. Is it "reasonable" for the caree to refuse respite care, outside help etc etc? (i.e, the carer has not had a break for years etc etc) , If no, then it can be imposed upon them. We were in the ridiculous position as a family that when my Mum had a stroke, Dad was still able to refuse outside help. It is a nonsense. I know of others who have had to move out of their family home etc because they have no rights in this situation, The same goes for those who have moved in with a loved one in good faith that they are doing the right thing and then loose their home when that person goes into full time care or dies. I don't no of any other group of people who's ooman rights are so disregarded.
Interesting post Sally.

The link to the thread that follows will provide some background as to the history of independent carers :

https://www.carersuk.org/forum/news-and ... hilit=2009

Posted at the time to provide some background for any curious new members ... almost a prep guide before launching into areas of concern which originated many years ago.

To understand the present , one has often to delve into the past.

I shall be monitoring , with interest , the progress of these " New kids on the block " in the light of 2018 , and the challenges that face all carers and carees alike,

As mentioned earlier , nothing really new when looking back at those hazy days a decade ago ... when many carers worked together , on several independent forums , in the main , irrespective of any personalities ... which produced " The Carers Letter " at that time ... a couple of older threads on here contain the text.

Direct link to the Carers Letter :

https://www.carersuk.org/forum/news-and ... ps-etc-303

If one notes the posters appearing in that thread , it reads like a " Whose who " of activists ... carers who cared about the plight of their fellow carers ... most long gone from this forum but still remembered in dispatches ... a Carers' Roll of Honour ?

The upto date version is our " Lord Kitch " ... different format ... and yet , contains all the grievances spelt out in the Carers Letter ... not one had been addressed , let alone recitified in a decade !

For example , the level of CA ... £ 50.55 ( 2008 ) / £ 62.70 ( 2018 ) ... a 20.02% increase over a decade.

If CA had been increased by the standard measure of inflation , it would be worth £ 66.73 today ... in essence , CA buys less today than a decade ago !!!

Back to the New Kids ... are they aware of the pitfalls as so mapped out on CarerWatch ?

The blueprints available on CarerWatch ... still valid as much today as they were a decade ago ?

Do they even know of this forum existence ?

Only time will tell , history is a great teacher ... I hope they do their homework !
Sally, I agree wholeheartedly. I've been a multiple carer, why is it that whatever the caree wants takes precedent over me. I was once bullied by a GP trying to get me to look after mum over Christmas, despite the fact that less than a week earlier I'd had major abdominal surgery with a 12 "wound, not even a scar yet, right across my stomach, and definitely banned from driving for the time being! We need a right to some sort of sick leave!
For those who frequent FaceAche , here is the NUC link :


Kicked off on the 11 March and , unless I've got it wrong , 4 members so far.

Petition ... 23 as I type.

Something doesn't add up figurewise ... ???

For those around a decade ago , the " National Carers Forum " might ring a few bells ... one of their members contributed to several threads on CarerWatch.

No connection whatsoever with this new NUC.