0:00:02 > 0:00:03SHE LAUGHS
0:00:03 > 0:00:06She was persuaded by successive governments that the thing to do
0:00:06 > 0:00:09was to get a pension for your old age.
0:00:09 > 0:00:13She paid a full National Health Insurance stamp,
0:00:13 > 0:00:15she paid all of her taxes...
0:00:15 > 0:00:19and this is how she gets repaid.
0:00:19 > 0:00:21Am I going to fight for her? Yeah.
0:00:22 > 0:00:25In her last days,
0:00:25 > 0:00:28Cynthia Molkner was at the centre of a fight over care funding.
0:00:28 > 0:00:31Cynthia suffers with severe dementia,
0:00:31 > 0:00:33needs everything doing for her,
0:00:33 > 0:00:35and she should be the responsibility of the NHS.
0:00:35 > 0:00:38Her daughter wants to confront those in power
0:00:38 > 0:00:41about the way her mother was treated.
0:00:41 > 0:00:44My mother wasn't just another bloody statistic!
0:00:44 > 0:00:47Frankly, I'm fed up with waiting for politicians.
0:00:47 > 0:00:51How long has this whole issue been going on?
0:00:51 > 0:00:55Tonight, we expose the multi-million-pound mistakes
0:00:55 > 0:00:57in charging for care in Wales.
0:00:57 > 0:01:00Every pound that we're spending on solicitors' fees and legal fees
0:01:00 > 0:01:02is a pound that's not being spent
0:01:02 > 0:01:04on the care of those people who deserve it.
0:01:04 > 0:01:08That's the only way rules will change, if people stand up and say,
0:01:08 > 0:01:10"No way."
0:01:24 > 0:01:26May I give you my leaflet?
0:01:26 > 0:01:28I can see you're in a hurry. Thank you.
0:01:28 > 0:01:31Helen Jones wanted a quiet retirement.
0:01:31 > 0:01:33Instead, she's on a mission.
0:01:33 > 0:01:37It's about my mum, who was not found to be eligible
0:01:37 > 0:01:41for NHS continuing care funding until six hours before she died.
0:01:41 > 0:01:44Three months ago, she'd watched her mother die at home.
0:01:44 > 0:01:48She'd nursed her for two and a half years without a break.
0:01:48 > 0:01:51She was bedridden with double incontinence,
0:01:51 > 0:01:53and she had to be spoonfed.
0:01:54 > 0:01:58She started a campaign to get the rules on care funding changed.
0:01:58 > 0:01:59It's too late for me.
0:01:59 > 0:02:02It's too late for me and it's too late for my mum.
0:02:02 > 0:02:06'But it's not too late for others who, like me,
0:02:06 > 0:02:08'want to challenge a fundamentally flawed system.'
0:02:08 > 0:02:11It's not working, and it has to change.
0:02:13 > 0:02:16It's a system being challenged across Wales,
0:02:16 > 0:02:20by people like Helen and her friend, Gill.
0:02:20 > 0:02:23- My mother's in a home.- Yeah. - And we're paying £2,500 a month.
0:02:23 > 0:02:24Well, you would be.
0:02:24 > 0:02:27Gill's mum has dementia,
0:02:27 > 0:02:31and no idea what Gill's had to do to pay for her care.
0:02:31 > 0:02:34I sold her house, and I felt like a thief in the night.
0:02:34 > 0:02:38'She still believes she has a home.'
0:02:38 > 0:02:41Children selling their mother's home before they die,
0:02:41 > 0:02:43in any other situation, would be criminal.
0:02:52 > 0:02:55You're going to have a little yoghurt for me, please.
0:02:55 > 0:02:58It's from the hospital, they said you have to have it
0:02:58 > 0:03:00when you don't have much of your breakfast.
0:03:00 > 0:03:03'I first met Helen Jones last summer.
0:03:03 > 0:03:06'She was exhausted taking care of her 83-year-old mum
0:03:06 > 0:03:08'at her home in Porthcawl.'
0:03:08 > 0:03:10Look who needs a cwtch.
0:03:10 > 0:03:12Who needs a cwtch?
0:03:12 > 0:03:13SHE CHUCKLES
0:03:13 > 0:03:15It's your little doggie, isn't it?
0:03:19 > 0:03:22Cynthia has advanced dementia.
0:03:23 > 0:03:26She was once a career woman running her own business.
0:03:26 > 0:03:29Most wonderful mother that ever lived.
0:03:29 > 0:03:34Supportive, kind, compassionate, understanding.
0:03:36 > 0:03:40A wonderful woman in all aspects, a wonderful businesswoman,
0:03:40 > 0:03:43an attractive, beautiful lady.
0:03:44 > 0:03:47My mum was a model when she was young.
0:03:49 > 0:03:51SHE LAUGHS
0:03:52 > 0:03:56Cynthia was diagnosed with vascular dementia after a stroke.
0:03:56 > 0:03:59She no longer recognised Helen,
0:03:59 > 0:04:02and had been bedbound since leaving hospital in 2009.
0:04:03 > 0:04:05Helen does everything for her.
0:04:07 > 0:04:097:00am, I start.
0:04:11 > 0:04:17Administer her medications, sometimes she's had an incontinence issue,
0:04:17 > 0:04:20so I deal with that, so it's apron on, gloves on, strip the bed.
0:04:22 > 0:04:24'Then the washing machine goes on. Sometimes twice a day.'
0:04:24 > 0:04:27Just put your hand... Good girl. Great, great.
0:04:27 > 0:04:29That's it.
0:04:29 > 0:04:31'I have to make sure that she's hydrated.
0:04:31 > 0:04:34'I have to check on her'
0:04:34 > 0:04:35every five to 15 minutes,
0:04:35 > 0:04:38because my mother tries to get out of bed sometimes,
0:04:38 > 0:04:40and the first sign is when she puts her knees up.
0:04:40 > 0:04:43In fact... I'll just have a quick look, if I may.
0:04:46 > 0:04:48Can you bring your hands out of the bed for me?
0:04:49 > 0:04:54If your primary care need is a health need, the NHS pays.
0:04:54 > 0:04:56But Cynthia wasn't considered ill enough.
0:04:56 > 0:04:58Helen, herself a pensioner,
0:04:58 > 0:05:02had resorted to selling her mum's things to pay for help.
0:05:02 > 0:05:04'How to pay the carers that come in?
0:05:04 > 0:05:08'Because we get charged 200 quid a month for the carers, you know.'
0:05:08 > 0:05:11Cos we've only got my pension and Mum's pension now.
0:05:11 > 0:05:14Their local health board, Abertawe Bro Morgannwg,
0:05:14 > 0:05:16refused to pay.
0:05:16 > 0:05:18After assessing Cynthia twice,
0:05:18 > 0:05:21it decided although her needs were constant,
0:05:21 > 0:05:23they weren't complex enough.
0:05:23 > 0:05:25Helen was challenging the decision.
0:05:26 > 0:05:29On cognition, we've got "high."
0:05:29 > 0:05:34Patients' mental and physical capability is scored on forms,
0:05:34 > 0:05:37a tick-box guide approved by the Welsh Government.
0:05:37 > 0:05:40Cynthia hadn't scored highly enough for free care.
0:05:40 > 0:05:43"Continence: moderate." My mother's doubly incontinent.
0:05:43 > 0:05:46Doubly incontinent.
0:05:46 > 0:05:49How much more incontinent do you have to be than doubly?
0:05:51 > 0:05:54Helen was sick of fighting the NHS.
0:05:54 > 0:05:56She'd asked solicitors to do it for her.
0:05:56 > 0:05:58I can't take any more.
0:05:58 > 0:06:01I can't, the fight's gone out of me, you know?
0:06:01 > 0:06:03The fight has just gone out of me, and...
0:06:03 > 0:06:06I need them, now, to do it for me, because I can't do it any more.
0:06:06 > 0:06:08Sorry.
0:06:15 > 0:06:20Lisa Morgan is helping clients win back wrongly paid care fees.
0:06:20 > 0:06:23She believed the assessors got it wrong in Cynthia's case.
0:06:23 > 0:06:28'They look at mobility, nutrition, communication,'
0:06:28 > 0:06:31there's 12 different care domains that they consider.
0:06:31 > 0:06:34And under those care domains, there's specific levels
0:06:34 > 0:06:38which range from "priority," down to "no needs."
0:06:38 > 0:06:42And the nurse must decide where the individual fits
0:06:42 > 0:06:44under those care domains.
0:06:44 > 0:06:48Cynthia suffers with severe dementia.
0:06:48 > 0:06:51She can't communicate, she's totally immobile,
0:06:51 > 0:06:55she is doubly incontinent, needs everything doing for her.
0:06:55 > 0:06:58Clearly, her primary need is a health need.
0:06:58 > 0:07:01And she should be the responsibility of the NHS.
0:07:01 > 0:07:04Feet are cold. Let's pull your jamas down. There you are.
0:07:04 > 0:07:07I still see that dementia, in some cases,
0:07:07 > 0:07:09will be deemed as a social need.
0:07:09 > 0:07:11They also deem them as being stable.
0:07:11 > 0:07:16Because they are bedbound, they cannot communicate,
0:07:16 > 0:07:20so I see arguments stating that this individual is not unpredictable.
0:07:22 > 0:07:24Their needs are intense.
0:07:25 > 0:07:30If Helen wanted a break, it would cost around £700 a week for respite.
0:07:30 > 0:07:32Cynthia's home would have to be sold
0:07:32 > 0:07:35if ever she needed to go into a nursing home,
0:07:35 > 0:07:38because her assets are worth over £22,500.
0:07:41 > 0:07:43Come and say hello to Nan, Tim.
0:07:43 > 0:07:47Helen's son, Tim, was worried his mum may no longer be able to cope.
0:07:47 > 0:07:50It's your only grandson, isn't it?
0:07:50 > 0:07:52Tim.
0:07:52 > 0:07:54She didn't want Nan to go into a home.
0:07:54 > 0:07:58I mean, there were times when I was thinking,
0:07:58 > 0:08:01just looking at Mum, how stressed and worn out she was,
0:08:01 > 0:08:05I just was wondering to myself if that was the right thing.
0:08:05 > 0:08:08Just all the assessments, it was...
0:08:08 > 0:08:11I don't know, it was added stress, added pressure.
0:08:11 > 0:08:12She just didn't need that at all.
0:08:12 > 0:08:15It was hard enough just looking after Nan,
0:08:15 > 0:08:18so it was like rubbing salt in the wounds, really.
0:08:21 > 0:08:25In March, Cynthia's health deteriorated further.
0:08:27 > 0:08:30Helen was warned that her mum was dying.
0:08:35 > 0:08:38'Well, the nurse has given me these little sponges on sticks,
0:08:38 > 0:08:41'just to keep her mouth comfortable.'
0:08:41 > 0:08:44Mum now hasn't eaten for three days and three nights.
0:08:47 > 0:08:51But Cynthia still wasn't getting continuing healthcare funding.
0:08:51 > 0:08:54So disillusioned with the system,
0:08:54 > 0:08:56Helen refused yet another assessment.
0:08:56 > 0:09:01But she did want to continue telling their story.
0:09:01 > 0:09:05I questioned really whether it was the right in to do,
0:09:05 > 0:09:07to subject her to...
0:09:07 > 0:09:09Erm...
0:09:09 > 0:09:13what we're doing today. Erm...
0:09:13 > 0:09:16But I think that really, if it can help anybody else
0:09:16 > 0:09:21who's approaching or already in this situation, then it's worth it.
0:09:22 > 0:09:28Because I believe that what is going on with the Welsh Assembly Government
0:09:28 > 0:09:33and the National Health Service is fundamentally flawed.
0:09:33 > 0:09:35Badly flawed.
0:09:37 > 0:09:39Cynthia could go into a hospital.
0:09:39 > 0:09:42But Helen's afraid her mum won't survive the journey.
0:09:45 > 0:09:49I felt that I wanted Mum to be in a hospital environment
0:09:49 > 0:09:52in her last days, hours.
0:09:52 > 0:09:55But that was borne out of my own personal fear,
0:09:55 > 0:10:02because I've never seen anyone dead, and certainly not my little darling.
0:10:02 > 0:10:05And I was frightened that it would happen to me on my own.
0:10:07 > 0:10:12Cynthia had long forgotten those she'd loved.
0:10:12 > 0:10:14Go round the other side, love.
0:10:18 > 0:10:20She's got... She's chesty now.
0:10:24 > 0:10:26Has she been sleeping all day?
0:10:26 > 0:10:31Well, she's unconscious, really, isn't she? I suppose.
0:10:35 > 0:10:38It wasn't really my Nan up there, when she fell ill.
0:10:38 > 0:10:40She had forgotten who I am,
0:10:40 > 0:10:43so I just choose to remember her the way that...
0:10:45 > 0:10:48..she was with me. So she loved me.
0:10:48 > 0:10:50I was her boy.
0:10:51 > 0:10:55'Sometimes I felt like she could tell who I was,
0:10:55 > 0:10:58'even though she didn't know my name or... I just had a feeling,
0:10:58 > 0:11:02'cos I'd look at her and she'd look at me'
0:11:02 > 0:11:04and reach her arm out for me and...
0:11:04 > 0:11:07So that was nice, but...
0:11:21 > 0:11:24I've just been told to keep her comfortable now.
0:11:28 > 0:11:30District nurses were monitoring Cynthia.
0:11:30 > 0:11:35But Helen still had to pay for carers to call.
0:11:35 > 0:11:37If Cynthia had lived in England,
0:11:37 > 0:11:40her solicitor believes she'd be assessed differently.
0:11:41 > 0:11:45In England, there's a care domain for cognition.
0:11:45 > 0:11:48But the level of need goes up to a severe.
0:11:48 > 0:11:52In Wales, it only goes up to a high.
0:11:52 > 0:11:56Now, in my experience, when you have the severe in England,
0:11:56 > 0:12:01that tips the balance in favour of getting NHS continuing healthcare.
0:12:01 > 0:12:05Because we don't have that severe for cognition in Wales,
0:12:05 > 0:12:09we're seeing that it's having a significant impact on assessments,
0:12:09 > 0:12:12and people are being wrongly denied funding.
0:12:15 > 0:12:18We've discovered almost 2,000 people in Wales are appealing
0:12:18 > 0:12:22health board decisions to refuse care funding.
0:12:24 > 0:12:28With one in three people over 65 expected to develop dementia,
0:12:28 > 0:12:30the demand for care will keep rising.
0:12:32 > 0:12:35Because Cynthia was in her last days,
0:12:35 > 0:12:38her solicitor asked the health board to finally agree
0:12:38 > 0:12:40she was eligible for funding.
0:12:42 > 0:12:45She believes the system is failing families.
0:12:45 > 0:12:47There is a clear postcode lottery in Wales.
0:12:47 > 0:12:51The assessment is very subjective, it's based on opinion,
0:12:51 > 0:12:55and therefore one person's view of who's eligible for continuing care
0:12:55 > 0:12:57differs to another.
0:12:57 > 0:13:02So I can see there is families that will get funding in one area,
0:13:02 > 0:13:04but if they were living 20 miles elsewhere,
0:13:04 > 0:13:06they wouldn't get funding.
0:13:10 > 0:13:13- Hello. Am I speaking to the pharmacist?- 'No.'
0:13:13 > 0:13:15- Could I have a word, please?- 'Yes.'
0:13:17 > 0:13:20Helen knew there was little more she could do for her mum.
0:13:21 > 0:13:25Mrs Molkner now has sadly been put onto a syringe driver,
0:13:25 > 0:13:28and the district nurse forgot to inform
0:13:28 > 0:13:31that we wouldn't require any further medications.
0:13:39 > 0:13:41I'm hoping that I'm in there with her.
0:13:43 > 0:13:47Then I'll tell my son, I'll break the news to my son,
0:13:47 > 0:13:51and then I think we'll just both go in and give her the biggest hug...
0:13:52 > 0:13:54..that is imaginable.
0:13:55 > 0:13:59We're nervous now to pick her up, in case of hurting her.
0:13:59 > 0:14:02But it won't hurt her when she's gone, so it will benefit us,
0:14:02 > 0:14:04to have a hug, you know?
0:14:11 > 0:14:14She was persuaded by successive governments
0:14:14 > 0:14:19that the thing to do was to get a pension for your old age.
0:14:19 > 0:14:22She paid a full National Health Insurance stamp,
0:14:22 > 0:14:25she paid all of her taxes.
0:14:25 > 0:14:28And this is how she gets repaid.
0:14:28 > 0:14:31Am I going to fight for her? Yeah!
0:14:35 > 0:14:39Helen had paid a high price for nursing her mother at home.
0:14:42 > 0:14:45I had my carer's allowance taken away when I became 60.
0:14:46 > 0:14:50And then they have, in my opinion, the audacity
0:14:50 > 0:14:54to charge us £50 a week...
0:14:54 > 0:14:57Thank you, Welsh Assembly Government, for capping it at 50,
0:14:57 > 0:15:02because otherwise we'd have been paying £284 a month, but...
0:15:02 > 0:15:06They take my carer's allowance away and charge me to look after her.
0:15:06 > 0:15:08Whoa, what's that all about?
0:15:13 > 0:15:16'Probably the single most challenging thing that I've ever had to do
0:15:16 > 0:15:18'in my entire life.
0:15:19 > 0:15:21'However, I'd do it again in a heartbeat.
0:15:21 > 0:15:25'I'd do it for ten years, let alone two-and-a-half years.
0:15:29 > 0:15:33'And it's where I want to be, with my mother, because I love her so much.
0:15:34 > 0:15:38'At the end of the day, when there's nothing else, there's love.'
0:15:47 > 0:15:51The following night, Cynthia died, with Helen at her side.
0:15:54 > 0:15:56In her final hours,
0:15:56 > 0:16:00the NHS decided that Cynthia WAS eligible for free care.
0:16:05 > 0:16:06I was speechless.
0:16:08 > 0:16:11Utterly, utterly speechless.
0:16:13 > 0:16:17And I feel completely insulted and ignored
0:16:17 > 0:16:19by an organisation...
0:16:20 > 0:16:22..that used to be the pride of Britain.
0:16:31 > 0:16:33A few hours before Cynthia passed away,
0:16:33 > 0:16:39we were informed that she was now eligible for NHS continuing care,
0:16:39 > 0:16:41after the health board had discussed her health needs
0:16:41 > 0:16:44with the district nurse services,
0:16:44 > 0:16:46who were caring for Cynthia in her final days.
0:16:48 > 0:16:51And if it was my own grandmother, I would have been extremely,
0:16:51 > 0:16:56extremely upset at hearing that news.
0:16:56 > 0:16:58And very angry.
0:17:11 > 0:17:14But Helen's fight with the NHS wasn't over.
0:17:23 > 0:17:27I haven't unplugged anything, just switched it off, that's all I've done.
0:17:27 > 0:17:30I suppose this'll be going out as quick as you get it back.
0:17:30 > 0:17:34Something in me wants things to happen quickly, you know, to...
0:17:35 > 0:17:38..to get back to normal.
0:17:39 > 0:17:42If there ever will be a normal now.
0:17:43 > 0:17:44Blimey!
0:17:46 > 0:17:47SHE SIGHS
0:17:51 > 0:17:54In the days that followed, Helen decided to start a campaign
0:17:54 > 0:18:00in memory of Cynthia, to change the way patients like her are assessed.
0:18:02 > 0:18:07I'm going to have the best leaflet you would ever, ever imagine.
0:18:08 > 0:18:13It's going to be a photograph of Mum when she was at her best in early middle age...
0:18:15 > 0:18:18..looking like Lana Turner.
0:18:18 > 0:18:21And on the other side will be a picture of her at end of life.
0:18:21 > 0:18:24This was a vibrant young woman,
0:18:24 > 0:18:27who through no fault of her own became severely ill.
0:18:30 > 0:18:35So that they won't lose sight of the fact that my mother wasn't just another bloody statistic.
0:18:37 > 0:18:41She wants to help other carers in Wales challenge NHS rules.
0:18:45 > 0:18:50I thought that she just wanted to get on with things
0:18:50 > 0:18:53and try to move on, and just start living her life again,
0:18:53 > 0:18:57but she's obviously felt so strongly about it.
0:18:57 > 0:19:01I'm just proud of her. I'm proud of the fact that she's doing it,
0:19:01 > 0:19:04and I'll support her as much as I can.
0:19:07 > 0:19:09That's the campaign.
0:19:09 > 0:19:12Word was spreading through Twitter and Facebook.
0:19:12 > 0:19:16But there was one person Helen wanted to speak to face-to-face.
0:19:16 > 0:19:22I would like to meet with Lesley Griffiths, the Health Minister,
0:19:22 > 0:19:27talk her through what happened in my case, and ask her
0:19:27 > 0:19:32if she thinks what's happened to me is fair, right and proper.
0:19:34 > 0:19:38In the meantime, Helen is meeting a professor of nursing.
0:19:38 > 0:19:41Last year, I took her case to Dame June Clark.
0:19:44 > 0:19:49The former President of the Royal College Of Nursing was a member
0:19:49 > 0:19:51of the Royal Commission on long-term care.
0:19:52 > 0:19:54Everybody would want to do
0:19:54 > 0:19:56everything they could for their mother.
0:19:56 > 0:19:59But I think the demands that were made on you
0:19:59 > 0:20:04by the system, and their reluctance to give you what you needed,
0:20:04 > 0:20:08is terrible, and it needs people like you to stand up and say so,
0:20:08 > 0:20:11so that other people don't have to go through it too.
0:20:13 > 0:20:17Today, Professor Clark is giving tips on how to handle politicians.
0:20:17 > 0:20:21I think the most important thing is not to be intimidated.
0:20:21 > 0:20:23- Yeah.- Not to be intimidated at all.
0:20:23 > 0:20:29There is nothing so powerful as the truth as told by people who have experienced it.
0:20:29 > 0:20:32- Ordinary people like me. - And that's what you've got.
0:20:32 > 0:20:36When you see the minister, get over the point that,
0:20:36 > 0:20:39as an elected representative of you
0:20:39 > 0:20:42and all the other people in Wales, she's got to do something about it.
0:20:43 > 0:20:47'Unless and until ordinary people who've been through it,
0:20:47 > 0:20:52'people like Helen, get together and say what it means,'
0:20:52 > 0:20:55we're not going to get the politicians to shift.
0:20:55 > 0:20:58And frankly, I'm fed up with waiting for politicians.
0:20:58 > 0:21:00It's got to be brought to their attention,
0:21:00 > 0:21:03because they are just brushing it, hoping it will go away.
0:21:03 > 0:21:06And it's not going away, not if it's got anything to do with me, it's not.
0:21:06 > 0:21:11What you're doing is really, really important.
0:21:11 > 0:21:14- I really take my hat off to you for that. Keep on in there.- Thank you.
0:21:14 > 0:21:19- Hang on in there.- Thank you very much, I'll do my best. My very best.
0:21:19 > 0:21:23We've discovered health boards across Wales
0:21:23 > 0:21:25have already refunded £3.6 million
0:21:25 > 0:21:30to patients and families who have been wrongly charged for care.
0:21:30 > 0:21:33With nearly 2,000 appeals yet to be heard,
0:21:33 > 0:21:36the figure will continue growing.
0:21:36 > 0:21:39Darren Millar, chair of the Public Accounts Committee,
0:21:39 > 0:21:43says the public is paying too high a price for the mistakes.
0:21:43 > 0:21:46Every pound that we're spending on solicitors' fees
0:21:46 > 0:21:48and legal fees is a pound that is not being
0:21:48 > 0:21:50spent on the care of those people who deserve it.
0:21:50 > 0:21:55Every one of the appeals which is successful is a tragedy, because,
0:21:55 > 0:21:58of course, people will have been through the mill in order to provide
0:21:58 > 0:22:02the care and support that the state ought to have been funding.
0:22:02 > 0:22:06I think it's heartbreaking when people have to sell a family home,
0:22:06 > 0:22:08which may have been with that family for generations,
0:22:08 > 0:22:13simply in order to meet the costs of caring for a loved one.
0:22:13 > 0:22:17So, what we have to do is make sure that there is a much shorter
0:22:17 > 0:22:20appeals process, so that when there is a disagreement,
0:22:20 > 0:22:23those disagreements can be resolved quickly.
0:22:25 > 0:22:28No-one from Abertawe Bro Morgannwg University Health Board
0:22:28 > 0:22:31wanted to be interviewed about Cynthia's case.
0:22:31 > 0:22:35They said it would not be appropriate to comment at present.
0:22:38 > 0:22:42- Helen's stepping up her campaign. - My God, look!
0:22:44 > 0:22:46Oh, fantastic.
0:22:48 > 0:22:50Bless her.
0:22:50 > 0:22:54Helen's making sure her local AM, First Minister Carwyn Jones,
0:22:54 > 0:22:56knows her story.
0:22:58 > 0:23:02Bereavement brings on a lot of emotions,
0:23:02 > 0:23:05maybe I'm still in the angry phase, I don't know.
0:23:05 > 0:23:08And that's what's powering me on.
0:23:09 > 0:23:14He made some very positive statements.
0:23:14 > 0:23:16Had some very supportive words for me,
0:23:16 > 0:23:19very, very supportive words.
0:23:19 > 0:23:22So what I want is people to get behind me,
0:23:22 > 0:23:25and if there are too many of us, then they'll have to listen.
0:23:25 > 0:23:27The campaign gathers pace.
0:23:27 > 0:23:31The director of the country's biggest nursing union
0:23:31 > 0:23:33wants to know more about what happened to Cynthia.
0:23:34 > 0:23:38Tina Donnelly represents thousands of nurses in Wales.
0:23:40 > 0:23:43What did they make of the forms they are using to assess patients?
0:23:45 > 0:23:51I'm sure an awful lot of nurses feel, they feel compromised,
0:23:51 > 0:23:55because I would feel I'm ticking a box, and I don't agree with it.
0:23:55 > 0:23:57It's not about them being compromised,
0:23:57 > 0:23:59it's about the decision support tool.
0:23:59 > 0:24:04The tools themselves do not enable much discretion.
0:24:04 > 0:24:07It reminds me of when you've got a tick in a box questionnaire
0:24:07 > 0:24:09being sent in about your likes and dislikes,
0:24:09 > 0:24:12you know that's not the answer you want to give,
0:24:12 > 0:24:15but it's the closest to the question being asked.
0:24:17 > 0:24:20Royal College of Nursing members in Wales have raised concerns
0:24:20 > 0:24:22with the union about assessments.
0:24:22 > 0:24:25So, if you've got nurses telling you it's not right,
0:24:25 > 0:24:28you've got patients telling you it's not right, and/or their relatives,
0:24:28 > 0:24:32then I think it's time that the Government listened,
0:24:32 > 0:24:34and changed the tool.
0:24:34 > 0:24:37The Welsh Government wants more people
0:24:37 > 0:24:40to be cared for in their own homes, rather than care homes,
0:24:40 > 0:24:42just as Cynthia was.
0:24:43 > 0:24:47If you really believe in moving care into the community,
0:24:47 > 0:24:50then let's have the appropriate assessment tools
0:24:50 > 0:24:53to deliver the appropriate financial packages,
0:24:53 > 0:24:58to ensure that patients do not suffer in their homes,
0:24:58 > 0:25:01because in the long-term it's going to cost the NHS more.
0:25:03 > 0:25:07Helen's campaign is about to get an unexpected boost.
0:25:07 > 0:25:14I have, from time to time, what we call cross-party events
0:25:14 > 0:25:16in the Welsh Government,
0:25:16 > 0:25:20so I'll give you an undertaking, the one that we have in October,
0:25:20 > 0:25:24- we'll look at your case, with regards to your mother.- Really?
0:25:24 > 0:25:28- And we'll ask you to come and talk in the Assembly.- I'd be delighted.
0:25:28 > 0:25:30And we'll ask each of the political parties
0:25:30 > 0:25:33to say what they are going to do.
0:25:34 > 0:25:37But the politician Helen really wants to talk to,
0:25:37 > 0:25:41the Welsh Health Minister, doesn't want to meet her.
0:25:41 > 0:25:43But Helen's not taking no for an answer.
0:25:43 > 0:25:46She takes best friend, Gill, and her campaign, to the Senedd.
0:25:46 > 0:25:50This is as close as I can get to Lesley Griffiths,
0:25:50 > 0:25:54because she refused to give me a few minutes of her time.
0:25:54 > 0:25:56I wanted to tell her my story, she didn't want to listen,
0:25:56 > 0:26:00and that makes me very angry. I'm not going to give up.
0:26:00 > 0:26:01I'm not going to give up,
0:26:01 > 0:26:05and I'm hoping that sometime she'll cave in, and she will give me
0:26:05 > 0:26:08a few minutes of her time, because I think I bloody deserve it!
0:26:08 > 0:26:11The Minister said she couldn't comment on the workings
0:26:11 > 0:26:16of Helen's local health board, but she did send Helen her sympathy.
0:26:17 > 0:26:20She spots a chance to speak to the Shadow Health Minister -
0:26:20 > 0:26:22Darren Millar.
0:26:22 > 0:26:24It's lovely to meet you.
0:26:24 > 0:26:27I've got parents who are growing old, I've got grandparents, who,
0:26:27 > 0:26:31one of them ended up in residential care, so I know the challenges.
0:26:31 > 0:26:33Can I just say that my mother's in a home,
0:26:33 > 0:26:36and I had to sell my mother's and father's home.
0:26:36 > 0:26:38She can't feed itself, she can't drink,
0:26:38 > 0:26:40she can't get out of bed herself, she can do...
0:26:40 > 0:26:44She's incontinent, and yet she is not eligible for this special care.
0:26:44 > 0:26:47And we've all got to work together on this, putting party politics aside,
0:26:47 > 0:26:49to make sure we get a solution which is right.
0:26:49 > 0:26:53- Fantastic, nice to meet you. - Thank you so much.
0:26:53 > 0:26:55- Lovely to meet you, too. - Thank you for your time.
0:26:55 > 0:26:57- Lovely to meet you.- Bye-bye.
0:26:57 > 0:27:01He seemed interested. I'm sure he is interested.
0:27:01 > 0:27:04So, please prove it, Darren, don't just talk the talk.
0:27:04 > 0:27:06BOTH: Walk the walk with us.
0:27:08 > 0:27:11The Wales Audit Office is reviewing the way assessments
0:27:11 > 0:27:15are carried out, but the findings won't be published
0:27:15 > 0:27:16until next spring.
0:27:16 > 0:27:19Darren Millar wants action now.
0:27:19 > 0:27:21They could change the way it operates,
0:27:21 > 0:27:23the buck stops with the Health Minister,
0:27:23 > 0:27:25she needs the brave enough to make that decision now.
0:27:25 > 0:27:28We asked the Minister for an interview about our findings,
0:27:28 > 0:27:32the concerns of the RCN, and Helen's story.
0:27:32 > 0:27:33She refused,
0:27:33 > 0:27:36but in a statement, she said the Welsh Government
0:27:36 > 0:27:39had issued guidance on continuing healthcare funding,
0:27:39 > 0:27:42and that the interpretation is a matter for health boards.
0:27:44 > 0:27:48If one or two small voices can create
0:27:48 > 0:27:53a massive awareness, and we get a majority, we can pummel them
0:27:53 > 0:27:55into doing something quicker than they're doing.
0:28:00 > 0:28:03If there were one piece of advice that
0:28:03 > 0:28:05I could give to the Minister, it would be, get out there,
0:28:05 > 0:28:12and spend a day shadowing a carer, somebody caring, like Helen did
0:28:12 > 0:28:15for her mum, and Minister, if that hasn't been
0:28:15 > 0:28:19part of your experience before, you will be shocked,
0:28:19 > 0:28:21and I hope that will give the trigger
0:28:21 > 0:28:25that makes you brave enough to take it on and do something about it.
0:28:30 > 0:28:34It could be a year before Helen finds out if she's won back
0:28:34 > 0:28:38the thousands of pounds she spent on carers for her mum.
0:28:41 > 0:28:45The fight she started for Cynthia is becoming bigger
0:28:45 > 0:28:47than she could have ever imagined.
0:28:47 > 0:28:50I don't stop there. I don't stop there
0:28:50 > 0:28:53because I'm not going to go away quietly.
0:28:53 > 0:28:55If I'm not listened to,
0:28:55 > 0:28:58I'm going to go on, and on, and on,
0:28:58 > 0:29:01until something happens,
0:29:01 > 0:29:04because it's too big a hot potato and it's got to be dealt with.
0:29:04 > 0:29:05End of.
0:29:15 > 0:29:19Subtitles by Red Bee Media Ltd