Helen's Story Week In Week Out

SHE LAUGHS

She was persuaded by successive governments that the thing to do

was to get a pension for your old age.

She paid a full National Health Insurance stamp,

she paid all of her taxes...

and this is how she gets repaid.

Am I going to fight for her? Yeah.

In her last days,

Cynthia Molkner was at the centre of a fight over care funding.

Cynthia suffers with severe dementia,

needs everything doing for her,

and she should be the responsibility of the NHS.

Her daughter wants to confront those in power

about the way her mother was treated.

My mother wasn't just another bloody statistic!

Frankly, I'm fed up with waiting for politicians.

How long has this whole issue been going on?

Tonight, we expose the multi-million-pound mistakes

in charging for care in Wales.

Every pound that we're spending on solicitors' fees and legal fees

is a pound that's not being spent

on the care of those people who deserve it.

That's the only way rules will change, if people stand up and say,

"No way."

May I give you my leaflet?

I can see you're in a hurry. Thank you.

Helen Jones wanted a quiet retirement.

Instead, she's on a mission.

It's about my mum, who was not found to be eligible

for NHS continuing care funding until six hours before she died.

Three months ago, she'd watched her mother die at home.

She'd nursed her for two and a half years without a break.

She was bedridden with double incontinence,

and she had to be spoonfed.

She started a campaign to get the rules on care funding changed.

It's too late for me.

It's too late for me and it's too late for my mum.

'But it's not too late for others who, like me,

'want to challenge a fundamentally flawed system.'

It's not working, and it has to change.

It's a system being challenged across Wales,

by people like Helen and her friend, Gill.

-My mother's in a home.

-Yeah.

-And we're paying £2,500 a month.

Well, you would be.

Gill's mum has dementia,

and no idea what Gill's had to do to pay for her care.

I sold her house, and I felt like a thief in the night.

'She still believes she has a home.'

Children selling their mother's home before they die,

in any other situation, would be criminal.

You're going to have a little yoghurt for me, please.

It's from the hospital, they said you have to have it

when you don't have much of your breakfast.

'I first met Helen Jones last summer.

'She was exhausted taking care of her 83-year-old mum

'at her home in Porthcawl.'

Look who needs a cwtch.

Who needs a cwtch?

SHE CHUCKLES

It's your little doggie, isn't it?

Cynthia has advanced dementia.

She was once a career woman running her own business.

Most wonderful mother that ever lived.

Supportive, kind, compassionate, understanding.

A wonderful woman in all aspects, a wonderful businesswoman,

an attractive, beautiful lady.

My mum was a model when she was young.

SHE LAUGHS

Cynthia was diagnosed with vascular dementia after a stroke.

She no longer recognised Helen,

and had been bedbound since leaving hospital in 2009.

Helen does everything for her.

7:00am, I start.

Administer her medications, sometimes she's had an incontinence issue,

so I deal with that, so it's apron on, gloves on, strip the bed.

'Then the washing machine goes on. Sometimes twice a day.'

Just put your hand... Good girl. Great, great.

That's it.

'I have to make sure that she's hydrated.

'I have to check on her'

every five to 15 minutes,

because my mother tries to get out of bed sometimes,

and the first sign is when she puts her knees up.

In fact... I'll just have a quick look, if I may.

Can you bring your hands out of the bed for me?

If your primary care need is a health need, the NHS pays.

But Cynthia wasn't considered ill enough.

Helen, herself a pensioner,

had resorted to selling her mum's things to pay for help.

'How to pay the carers that come in?

'Because we get charged 200 quid a month for the carers, you know.'

Cos we've only got my pension and Mum's pension now.

Their local health board, Abertawe Bro Morgannwg,

refused to pay.

After assessing Cynthia twice,

it decided although her needs were constant,

they weren't complex enough.

Helen was challenging the decision.

On cognition, we've got "high."

Patients' mental and physical capability is scored on forms,

a tick-box guide approved by the Welsh Government.

Cynthia hadn't scored highly enough for free care.

"Continence: moderate." My mother's doubly incontinent.

Doubly incontinent.

How much more incontinent do you have to be than doubly?

Helen was sick of fighting the NHS.

She'd asked solicitors to do it for her.

I can't take any more.

I can't, the fight's gone out of me, you know?

The fight has just gone out of me, and...

I need them, now, to do it for me, because I can't do it any more.

Sorry.

Lisa Morgan is helping clients win back wrongly paid care fees.

She believed the assessors got it wrong in Cynthia's case.

'They look at mobility, nutrition, communication,'

there's 12 different care domains that they consider.

And under those care domains, there's specific levels

which range from "priority," down to "no needs."

And the nurse must decide where the individual fits

under those care domains.

Cynthia suffers with severe dementia.

She can't communicate, she's totally immobile,

she is doubly incontinent, needs everything doing for her.

Clearly, her primary need is a health need.

And she should be the responsibility of the NHS.

Feet are cold. Let's pull your jamas down. There you are.

I still see that dementia, in some cases,

will be deemed as a social need.

They also deem them as being stable.

Because they are bedbound, they cannot communicate,

so I see arguments stating that this individual is not unpredictable.

Their needs are intense.

If Helen wanted a break, it would cost around £700 a week for respite.

Cynthia's home would have to be sold

if ever she needed to go into a nursing home,

because her assets are worth over £22,500.

Come and say hello to Nan, Tim.

Helen's son, Tim, was worried his mum may no longer be able to cope.

It's your only grandson, isn't it?

Tim.

She didn't want Nan to go into a home.

I mean, there were times when I was thinking,

just looking at Mum, how stressed and worn out she was,

I just was wondering to myself if that was the right thing.

Just all the assessments, it was...

I don't know, it was added stress, added pressure.

She just didn't need that at all.

It was hard enough just looking after Nan,

so it was like rubbing salt in the wounds, really.

In March, Cynthia's health deteriorated further.

Helen was warned that her mum was dying.

'Well, the nurse has given me these little sponges on sticks,

'just to keep her mouth comfortable.'

Mum now hasn't eaten for three days and three nights.

But Cynthia still wasn't getting continuing healthcare funding.

So disillusioned with the system,

Helen refused yet another assessment.

But she did want to continue telling their story.

I questioned really whether it was the right in to do,

to subject her to...

Erm...

what we're doing today. Erm...

But I think that really, if it can help anybody else

who's approaching or already in this situation, then it's worth it.

Because I believe that what is going on with the Welsh Assembly Government

and the National Health Service is fundamentally flawed.

Badly flawed.

Cynthia could go into a hospital.

But Helen's afraid her mum won't survive the journey.

I felt that I wanted Mum to be in a hospital environment

in her last days, hours.

But that was borne out of my own personal fear,

because I've never seen anyone dead, and certainly not my little darling.

And I was frightened that it would happen to me on my own.

Cynthia had long forgotten those she'd loved.

Go round the other side, love.

She's got... She's chesty now.

Has she been sleeping all day?

Well, she's unconscious, really, isn't she? I suppose.

It wasn't really my Nan up there, when she fell ill.

She had forgotten who I am,

so I just choose to remember her the way that...

..she was with me. So she loved me.

I was her boy.

'Sometimes I felt like she could tell who I was,

'even though she didn't know my name or... I just had a feeling,

'cos I'd look at her and she'd look at me'

and reach her arm out for me and...

So that was nice, but...

I've just been told to keep her comfortable now.

District nurses were monitoring Cynthia.

But Helen still had to pay for carers to call.

If Cynthia had lived in England,

her solicitor believes she'd be assessed differently.

In England, there's a care domain for cognition.

But the level of need goes up to a severe.

In Wales, it only goes up to a high.

Now, in my experience, when you have the severe in England,

that tips the balance in favour of getting NHS continuing healthcare.

Because we don't have that severe for cognition in Wales,

we're seeing that it's having a significant impact on assessments,

and people are being wrongly denied funding.

We've discovered almost 2,000 people in Wales are appealing

health board decisions to refuse care funding.

With one in three people over 65 expected to develop dementia,

the demand for care will keep rising.

Because Cynthia was in her last days,

her solicitor asked the health board to finally agree

she was eligible for funding.

She believes the system is failing families.

There is a clear postcode lottery in Wales.

The assessment is very subjective, it's based on opinion,

and therefore one person's view of who's eligible for continuing care

differs to another.

So I can see there is families that will get funding in one area,

but if they were living 20 miles elsewhere,

they wouldn't get funding.

-Hello. Am I speaking to the pharmacist?

-'No.'

-Could I have a word, please?

-'Yes.'

Helen knew there was little more she could do for her mum.

Mrs Molkner now has sadly been put onto a syringe driver,

and the district nurse forgot to inform

that we wouldn't require any further medications.

I'm hoping that I'm in there with her.

Then I'll tell my son, I'll break the news to my son,

and then I think we'll just both go in and give her the biggest hug...

..that is imaginable.

We're nervous now to pick her up, in case of hurting her.

But it won't hurt her when she's gone, so it will benefit us,

to have a hug, you know?

She was persuaded by successive governments

that the thing to do was to get a pension for your old age.

She paid a full National Health Insurance stamp,

she paid all of her taxes.

And this is how she gets repaid.

Am I going to fight for her? Yeah!

Helen had paid a high price for nursing her mother at home.

I had my carer's allowance taken away when I became 60.

And then they have, in my opinion, the audacity

to charge us £50 a week...

Thank you, Welsh Assembly Government, for capping it at 50,

because otherwise we'd have been paying £284 a month, but...

They take my carer's allowance away and charge me to look after her.

Whoa, what's that all about?

'Probably the single most challenging thing that I've ever had to do

'in my entire life.

'However, I'd do it again in a heartbeat.

'I'd do it for ten years, let alone two-and-a-half years.

'And it's where I want to be, with my mother, because I love her so much.

'At the end of the day, when there's nothing else, there's love.'

The following night, Cynthia died, with Helen at her side.

In her final hours,

the NHS decided that Cynthia WAS eligible for free care.

I was speechless.

Utterly, utterly speechless.

And I feel completely insulted and ignored

by an organisation...

..that used to be the pride of Britain.

A few hours before Cynthia passed away,

we were informed that she was now eligible for NHS continuing care,

after the health board had discussed her health needs

with the district nurse services,

who were caring for Cynthia in her final days.

And if it was my own grandmother, I would have been extremely,

extremely upset at hearing that news.

And very angry.

But Helen's fight with the NHS wasn't over.

I haven't unplugged anything, just switched it off, that's all I've done.

I suppose this'll be going out as quick as you get it back.

Something in me wants things to happen quickly, you know, to...

..to get back to normal.

If there ever will be a normal now.

Blimey!

SHE SIGHS

In the days that followed, Helen decided to start a campaign

in memory of Cynthia, to change the way patients like her are assessed.

I'm going to have the best leaflet you would ever, ever imagine.

It's going to be a photograph of Mum when she was at her best in early middle age...

..looking like Lana Turner.

And on the other side will be a picture of her at end of life.

This was a vibrant young woman,

who through no fault of her own became severely ill.

So that they won't lose sight of the fact that my mother wasn't just another bloody statistic.

She wants to help other carers in Wales challenge NHS rules.

I thought that she just wanted to get on with things

and try to move on, and just start living her life again,

but she's obviously felt so strongly about it.

I'm just proud of her. I'm proud of the fact that she's doing it,

and I'll support her as much as I can.

That's the campaign.

Word was spreading through Twitter and Facebook.

But there was one person Helen wanted to speak to face-to-face.

I would like to meet with Lesley Griffiths, the Health Minister,

talk her through what happened in my case, and ask her

if she thinks what's happened to me is fair, right and proper.

In the meantime, Helen is meeting a professor of nursing.

Last year, I took her case to Dame June Clark.

The former President of the Royal College Of Nursing was a member

of the Royal Commission on long-term care.

Everybody would want to do

everything they could for their mother.

But I think the demands that were made on you

by the system, and their reluctance to give you what you needed,

is terrible, and it needs people like you to stand up and say so,

so that other people don't have to go through it too.

Today, Professor Clark is giving tips on how to handle politicians.

I think the most important thing is not to be intimidated.

-Yeah.

-Not to be intimidated at all.

There is nothing so powerful as the truth as told by people who have experienced it.

-Ordinary people like me.

-And that's what you've got.

When you see the minister, get over the point that,

as an elected representative of you

and all the other people in Wales, she's got to do something about it.

'Unless and until ordinary people who've been through it,

'people like Helen, get together and say what it means,'

we're not going to get the politicians to shift.

And frankly, I'm fed up with waiting for politicians.

It's got to be brought to their attention,

because they are just brushing it, hoping it will go away.

And it's not going away, not if it's got anything to do with me, it's not.

What you're doing is really, really important.

-I really take my hat off to you for that. Keep on in there.

-Thank you.

-Hang on in there.

-Thank you very much, I'll do my best. My very best.

We've discovered health boards across Wales

have already refunded £3.6 million

to patients and families who have been wrongly charged for care.

With nearly 2,000 appeals yet to be heard,

the figure will continue growing.

Darren Millar, chair of the Public Accounts Committee,

says the public is paying too high a price for the mistakes.

Every pound that we're spending on solicitors' fees

and legal fees is a pound that is not being

spent on the care of those people who deserve it.

Every one of the appeals which is successful is a tragedy, because,

of course, people will have been through the mill in order to provide

the care and support that the state ought to have been funding.

I think it's heartbreaking when people have to sell a family home,

which may have been with that family for generations,

simply in order to meet the costs of caring for a loved one.

So, what we have to do is make sure that there is a much shorter

appeals process, so that when there is a disagreement,

those disagreements can be resolved quickly.

No-one from Abertawe Bro Morgannwg University Health Board

wanted to be interviewed about Cynthia's case.

They said it would not be appropriate to comment at present.

-Helen's stepping up her campaign.

-My God, look!

Oh, fantastic.

Bless her.

Helen's making sure her local AM, First Minister Carwyn Jones,

knows her story.

Bereavement brings on a lot of emotions,

maybe I'm still in the angry phase, I don't know.

And that's what's powering me on.

He made some very positive statements.

Had some very supportive words for me,

very, very supportive words.

So what I want is people to get behind me,

and if there are too many of us, then they'll have to listen.

The campaign gathers pace.

The director of the country's biggest nursing union

wants to know more about what happened to Cynthia.

Tina Donnelly represents thousands of nurses in Wales.

What did they make of the forms they are using to assess patients?

I'm sure an awful lot of nurses feel, they feel compromised,

because I would feel I'm ticking a box, and I don't agree with it.

It's not about them being compromised,

it's about the decision support tool.

The tools themselves do not enable much discretion.

It reminds me of when you've got a tick in a box questionnaire

being sent in about your likes and dislikes,

you know that's not the answer you want to give,

but it's the closest to the question being asked.

Royal College of Nursing members in Wales have raised concerns

with the union about assessments.

So, if you've got nurses telling you it's not right,

you've got patients telling you it's not right, and/or their relatives,

then I think it's time that the Government listened,

and changed the tool.

The Welsh Government wants more people

to be cared for in their own homes, rather than care homes,

just as Cynthia was.

If you really believe in moving care into the community,

then let's have the appropriate assessment tools

to deliver the appropriate financial packages,

to ensure that patients do not suffer in their homes,

because in the long-term it's going to cost the NHS more.

Helen's campaign is about to get an unexpected boost.

I have, from time to time, what we call cross-party events

in the Welsh Government,

so I'll give you an undertaking, the one that we have in October,

-we'll look at your case, with regards to your mother.

-Really?

-And we'll ask you to come and talk in the Assembly.

-I'd be delighted.

And we'll ask each of the political parties

to say what they are going to do.

But the politician Helen really wants to talk to,

the Welsh Health Minister, doesn't want to meet her.

But Helen's not taking no for an answer.

She takes best friend, Gill, and her campaign, to the Senedd.

This is as close as I can get to Lesley Griffiths,

because she refused to give me a few minutes of her time.

I wanted to tell her my story, she didn't want to listen,

and that makes me very angry. I'm not going to give up.

I'm not going to give up,

and I'm hoping that sometime she'll cave in, and she will give me

a few minutes of her time, because I think I bloody deserve it!

The Minister said she couldn't comment on the workings

of Helen's local health board, but she did send Helen her sympathy.

She spots a chance to speak to the Shadow Health Minister -

Darren Millar.

It's lovely to meet you.

I've got parents who are growing old, I've got grandparents, who,

one of them ended up in residential care, so I know the challenges.

Can I just say that my mother's in a home,

and I had to sell my mother's and father's home.

She can't feed itself, she can't drink,

she can't get out of bed herself, she can do...

She's incontinent, and yet she is not eligible for this special care.

And we've all got to work together on this, putting party politics aside,

to make sure we get a solution which is right.

-Fantastic, nice to meet you.

-Thank you so much.

-Lovely to meet you, too.

-Thank you for your time.

-Lovely to meet you.

-Bye-bye.

He seemed interested. I'm sure he is interested.

So, please prove it, Darren, don't just talk the talk.

BOTH: Walk the walk with us.

The Wales Audit Office is reviewing the way assessments

are carried out, but the findings won't be published

until next spring.

Darren Millar wants action now.

They could change the way it operates,

the buck stops with the Health Minister,

she needs the brave enough to make that decision now.

We asked the Minister for an interview about our findings,

the concerns of the RCN, and Helen's story.

She refused,

but in a statement, she said the Welsh Government

had issued guidance on continuing healthcare funding,

and that the interpretation is a matter for health boards.

If one or two small voices can create

a massive awareness, and we get a majority, we can pummel them

into doing something quicker than they're doing.

If there were one piece of advice that

I could give to the Minister, it would be, get out there,

and spend a day shadowing a carer, somebody caring, like Helen did

for her mum, and Minister, if that hasn't been

part of your experience before, you will be shocked,

and I hope that will give the trigger

that makes you brave enough to take it on and do something about it.

It could be a year before Helen finds out if she's won back

the thousands of pounds she spent on carers for her mum.

The fight she started for Cynthia is becoming bigger

than she could have ever imagined.

I don't stop there. I don't stop there

because I'm not going to go away quietly.

If I'm not listened to,

I'm going to go on, and on, and on,

until something happens,

because it's too big a hot potato and it's got to be dealt with.

End of.

Subtitles by Red Bee Media Ltd