Welsh Labour 2015 – Owen Smith

On Sunday, 15 February 2015, at the Welsh Labour Conference in Swansea, the Shadow Secretary of State for Wales, Owen Smith MP gave what some audience members said was the “speech of the conference”.

I’ve looked for a transcript to point people to, but haven’t found one as yet, which is a shame, perhaps, as it is worth a ‘read’. Being too lazy to transcribe it myself, I’ve just thrown my recording up on here. However, I do think there’s a lot to be said for listening: after all, you get to hear the subtle nuances that text can’t usually give.

Was his speech really better than Labour leader, Ed Milliband’s, given the previous afternoon?

Was Owen Smith’s speech really more passionate than that of Carwyn Jones, Welsh First Minister, given the previous morning?

I’ll let you be the judge of that…

Well: Owen’s speech is half an hour long, so make a cup of tea, grab some biscuits, sit down and enjoy. I hope the quality is OK?

Just click the arrow on the player below.

I’ll see if I can get both the Prime Minister and First Minister’s speeches up on ‘underoccupied’ in a day or so. They’re both worth a listen.

If you want to find out more about Warren, our grandson, click here.

If Trust in a Doctor is Lost

I’ve been trying to write this for a week or so now, without much success, because I wanted to try and explain my feelings about events following my fifth deep-vein thrombosis [DVT], and how deeply I have been affected by them without being too ‘dramatic’. But the [very one-sided], conversation I have written below is more-or-less, as it occurred. I wish it had never happened, because now, I’ve been frightened. Frightened because I can no longer trust the doctors treating me.

Up until the beginning of August, I was taking a new[ish], anti-coagulation drug called Rivaroxaban, and was highly delighted as the doctors prescribing it had guaranteed [virtually], that I would never get a clot again.

That, to me was such an immense relief that is hard to describe. The weight of at least one of the six medical conditions I have had been taken from my mind: or so I thought

——————–

“I don’t believe you either,” said the consultant sitting next to his desk in the room he’d commandeered in the outpatient department for that afternoon’s clinic.

There was a student doctor, or trainee of some sort sitting in – with my permission – and the usual nurse, observing at the back, against the far wall.

I was utterly horrified and deeply shocked: I had just explained that I had been told that on hearing I’d developed my fifth DVT, the Haemotologist in charge of my anti-coagulation had stated, categorically, that I could not possibly have been taking the new anti-coagulant drug that I’d been prescribed: Rivaroxaban. I’d further explained how hearing that had upset and worried me and that the doctor had only meet me face-to-face two or three times in as many years.

This Rivaroxaban had been prescribed at the beginning of 2014 following my fourth DVT, which had developed last December and following the ‘umpteenth’ bout of cellulitis in my left leg and, whilst I was taking Warfarin [probably the commonest anti-coagulation drug used today]. Rivaroxaban has been used for some time in hospitals to prevent DVTs in patients recovering from operations which would leave them relatively immobile for a time. It has not long been used to treat outpatients like myself who suffer from repeated DVTs occuring for no apparent reason; especially those who appear unresponsive to Warfarin.

Back in January, I’d been in to the hospital to meet with the anti-coagulation nurse to receive my ‘lecture’ about Rivaroxaban: including stuff like the fact it has no antidote should I overdose, how it must be taken regularly with food and so on.

Surprisingly, I had to sign a ‘disclaimer’ stating that I’d had this mandatory ‘lecture’ and also agreed to take the [probably slight], risk of taking the drug. I never expected or even realised that there may be times when patients might have to sign disclaimers to receive drugs. But still.

So, here I was, hearing another doctor essentially calling me a liar: this time to my face.

Exactly one week previously, I’d been to see the specialist anti-coagulation nurse in the afternoon following an ultrasound scan that morning which confirmed my very real fear that the main vein in my left leg was once more a mess of clots. She told me she’d spoken to the consultant, who had stated I hadn’t been taking the Rivaroxaban; and how she’d defended me and told him that of all their patients, she was certain I would have been taking the prescribed drug properly.

She was absolutely correct: I had taken the Rivaroxaban every single day since it was first prescribed. Religiously and without fail.

This nurse is just one of quite a few in our local hospital who probably know me fairly well by now. I have had blood samples taken, treatments and general nursing care given by them as both in- and outpatient over the past 7 years or so. It has been a natural thing, getting to know them and vice-versa. I probably average one visit a week over time, and sometimes, as at the beginning of August, I may attend every day. There is also the fact that many of the hospital staff are very aware of me from following my family’s bedroom tax story.

Despite being questioned by someone who knows me, the consultant refused to change his opinion: I was not taking the Rivaroxaban.

I had not, however, anticipated the second consultant, also a Haemotologist, who deals with my Polycythaemia disbelieving me.

My shock was profound and I very nearly completely lost my temper in anger and frustration. I couldn’t help raising my voice though.

I told the doctor in no uncertain terms what I thought and how he, and his colleague, had made me feel. I was both desperately upset and quite frightened now.

“I’ve never missed a single dose of Rivaroxaban,” I told him, “yet you call me a liar to my face and in front of a student too? Who the hell do you think you are? I’m fully aware that any DVT is a potentially life-threatening condition. I’ve had two pieces of clot break off in the past, as you know, causing me Pulmonary Embolisms [PEs], and the second one occurred while I was at your clinic, when I collapsed and was rushed to A&E for immediate treatment.

“Do you think I want another? I’ve been told that with my lung condition I’m lucky to have survived the ones I’ve had. Do you really think I want to die? Do you think preventing a life-threatening condition means nothing to me? If I want to kill myself, I have a large bottle or two of Oramorph and probably over a hundred slow-release Morphine tablets at home that I could eat and drink. That would be a lot less painful and more certain than trying to make a clot occur. I don’t play Russian roulette with my life!”

He literally sat in stunned silence. The student was intently studying her shoes and the nurse smiled wryly, knowing I was right. She may even have been enjoying my outburst.

But I hadn’t finished yet.

“You may think I enjoy playing Russian roulette, but I’m telling you right now, to your face, I think it is you and your colleague who are playing that with my life. And it scares me.

“You take the ‘easy’ option. You show how little you care by dismissing me like that. You choose to call me a liar rather than wonder what may have ‘gone wrong’, or why I developed this clot while taking the ‘infallible’ Rivaroxaban. I know it costs £2.10 a tablet and is expensive compared to Warfarin and I also know that in the clinical trial results presented to the National Institute for Health and Care Excellence [NICE}, that around six people taking Rivaroxaban developed clots.”

“You know that do you?” He managed to speak at last.

“Yes, and a lot more besides,” I continued. By now I couldn’t stop. I felt that if I did, I’d just burst into tears. I felt like I was going mad. “I never take a drug until I’ve researched it as much as possible on the internet and by asking medical people I know, at least one of whom is far more qualified in the physiological chemistry and micro-biological effect of drugs than you are.”

The thought occurred to me at that point that perhaps I was now verging on just being insulting or perhaps arrogant, but I dismissed it. I no longer cared.

As far as I was concerned, and still am, these doctors who I had completely trusted, literally with my life, had demonstrated most clearly that they had no concern for me whatsoever. There was and is, no way they can ever convince me otherwise.

“Don’t you think I want to know why I got this new clot?” I asked. “You don’t want to investigate the reason, do you?”

He looked back as sheepishly as a young child being scolded. His eyes told me he now realised I’d been telling the truth and what he’d said was a mistake. But it was too late. Its a very different level of emotion to experience when it is your life at stake: of that I’m certain. This was far, far more serious than discussing treatment for a cold or broken bone perhaps?

“Don’t you think the drug manufacturers will want to know?” I went on.
“Perhaps the clot was caused by one of my other drugs interacting with the Rivaroxaban? Perhaps it is something utterly stupid like drinking too much coca-cola or eating too many chillies? Perhaps I have some underlying blood-condition that predisposes me to excess clotting? You’ve never tested me for anything like that, but whatever it is, don’t you think I need to know?”

He sat gaping at me. I doubt he’d ever been spoken to like that before. I doubt many doctors are because of the way patients, myself included, often inexplicably feel somehow ‘inferior’ [if that’s the right word?], to them. I almost felt sorry for him and took absolutely no pleasure at all from knowing that I’d hurt him.

“I took those tablets every single day,” I said quietly. “But to you, I’m lying. That has made me lose all the faith and trust I had in you, so I’m going now.”

With that, I stood, adjusted my oxygen backpack, took my crutch, apologised to the student, smiled at the nurse and walked out.

Up until that day, I had one hundred percent trust in the NHS and all the doctors I’d been in contact with. I still think I have faith in the NHS, but now I know, beyond any doubt whatsoever, that I will question every clinical decision made about me.

I will question every doctor with whom I come into contact, because now I have seen and, sadly, experienced for myself something that I had only heard or read about before: that doctors can far too easily become complacent and believe exclusively in their own clinical expertise or judgement.

For a doctor to call a patient a liar, to not suggest further potentially life-saving tests, all because they believe they are infallible is a very, very dangerous place for the doctor to be.

It is perhaps, even more dangerous for their patients.

——————–

This story is ongoing. I will update it as and when there is something to report.

Bedroom Tax for [Twitter] Dummies

Below are some examples of the type of infuriating and generally ignorant Bedroom Tax-related tweets that are repeatedly posted on Twitter by people who are often:

    a] completely ignorant,
    b] out for a spot of ‘Leftie-baiting’,
    c] Liberal Democrat MP’s or councillors,
    d] Scottish CyberNats who don’t believe the truth,
    e] Tory councillors,supporters and often MP’s,
    f] a few Labour councillors, supporters and occasionally MP’s
    g] mixed up UKIP persons, or
    h] a combination of the above, generally including ‘a’.

Unfortunately, 140 characters is rarely enough to give a proper, educational reply. However, the average tweeter of observations like those below is normally unable to accept that maybe, just possibly, they are completely wrong.

If a more educated tweeter points out this fact, in many cases their response will be well, perhaps ‘childish’?

So here we go, not in any order, but hey, does it matter?

Its not a tax.
No, its not Income Tax. So what: get over it, Bedroom Tax is a name in common use and defines what it appears to be to most people. In fact, I believe it has just been added to the latest edition of Chambers Dictionary.

What’s the problem, its only a cut in benefits, not like anyone has to pay anything.
Yes but the person whose benefits are cut has to pay the same amount as they lose. Losing an average of £14 a week from £72.40 leaves a single person very little to live on.

Getting less of someone else’s money [welfare] is not tax.
A common assumption that the benefit claimant has never worked and thus never paid Income Tax or National Insurance, which most actually have done and plenty of claimants still are.

They should get a job.
Most people without work would love a job, but job vacancies depend very much on where you live and the local ‘job-market’. Also, the fastest-growing group claiming Housing Benefit are in work.

Labour introduced Bedroom Tax in 2008.
No they didn’t. That was Local Housing Allowance, basing Housing Benefit rates on a percentage of the average rent in each Local Authority area.

Anyway, LHA is the same as Bedroom Tax in principle.
No it isn’t. Its aim was to curtail high rents charged by cynical, greedy landlords to Housing Benefit recipients, knowing that the Local Authority would have to pay.

LHA still affected tenants just like Bedroom Tax does.
Who? When? LHA was not applied to tenants who were already renting in the private sector. It was applied to new tenancies only and the prospective tenant would know in advance how much rent they would be able to afford. It arguably provided choice.

Private tenants are people who pay the rent themselves and don’t get Housing Benefit.
Rubbish. Private rentals are where people rent from a landlord who isn’t a Local Authority or a Housing Association. Plenty of people in private properties receive Housing Benefit. In some cases they have moved from LA or HA homes because of the Bedroom Tax and now claim more in Housing Benefit.

People who live in council houses shouldn’t expect to stay there for life.
Well, if they don’t claim Housing Benefit they can. If they pay their Bedroom Tax, they can. A large percentage of council houses are also ‘underoccupied’ by working people or families. And don’t forget the many thousands ‘underoccupied’ by pensioners, who may or may not be claiming Housing Benefit.

Thousands of families are living in overcrowded housing and need rehousing.
Many of those families are technically ‘overcrowded’, yes. But not all of them want to move to a different area or even town, where they may not know people or have no support network, just to get a larger property. That’s the exact same explanation given by many people hit by the Bedroom Tax who also don’t want to move.

Why should the ‘taxpayer’ subsidise spare rooms?
This common argument makes the assumption that the people affected have never worked, paid Income Tax and National Insurance. Everyone pays VAT, a tax, on most everyday shopping.

Why should people on benefits get to choose where they live.
Mostly they don’t. Not like someone buying a house. They get offered a property, usually on an ‘estate’ in the town that they already live in. Perhaps they already live on that ‘estate’. They are allocated their home according to their need and many people have to wait for a suitable property to become vacant. The waiting time is not so much due to people underoccupying as the fact that too few Social Housing properties have been built since Thatcher’s ‘right to buy’.

People don’t need spare rooms anyway.
Why not? Disabled people need ‘space’ to store medical and other disability-related equipment. Carers may need to stay overnight. Divorced parents need a room for when the kids come to stay. A son or daughter may come home in the holidays from university. There’s plenty of reasons. And anyway, what’s wrong with having an extra room? Most people probably have one, or two, or…

Nobody on benefits should be able to stay in a house if they are underoccupying.
Well, what about people who are buying their own homes? If they lose their jobs, they more than likely will have to claim benefits at some stage. They are entitled to mortgage interest paid by benefits [SMI]. Why should they not have to move?

Labour are traitors. They could have voted the Bedroom Tax out, but didn’t.
This one is a real Scottish CyberNat favourite. Never mind that the MPs who didn’t vote were ‘paired’, that’s way too complicated. If every MP of every party had voted at the Bedroom Tax Opposition Day Debate on 12 November, 2013, the outcome would have been identical. Labour simply do not have a majority in the House of Commons to win any vote.

People can work more hours to get the money to pay.
Oh, so there are working people losing [some] money because of Bedroom Tax then? Work more hours? Doesn’t that depend on their er… employer?

People can take in a lodger which will also make them better off.
If you are sick or disabled, there are a myriad reasons why another person roaming around your home would be intolerable. Most families affected by Bedroom Tax contain at least one sick or disabled person. Having a lodger may also adversely affect benefit entitlements.

Disabled children are exempt.
Oh no they aren’t. Only those who need a spare room to sleep in because their disability is of such a nature that they would disturb a non-disabled sibling’s sleep if they had to share a bedroom.

Disabled people are exempt.
Which ones? Only those who need a non-resident overnight carer; and that only includes the claimant or the claimant’s partner. Another disabled person in the household who needs a carer to stay overnight doesn’t qualify. Needing a room for any other purpose such as storing disability-related equipment doesn’t grant an exception.

Disabled and sick people can move like anyone else.
Yes, no problem. Adaptations are often made to the sick or disabled person’s home, either paid for themselves when working, or by their Local Authority. Sometimes their home is even purpose-built. For such people to move is nigh-on impossible and in most cases would cost the ‘taxpayer’ even more money to re-adapt a smaller place.

In future, I’m going to try and not get into stupid arguments with people who post tweets along the above lines. Instead, I will point them to this page. But I bet few will actually read it!

I’m sure this list can be added to, so if you can suggest any additions – adaptations even – then don’t hesitate to let me know! I’m sure there’s a comments bit down below somewhere…

My Bedroom Tax Story – 2

If you missed part 1, you can read it here…

So we’d been on the television; a very surreal experience indeed. Normally, the news is about ‘other people’, but even if parallels can be drawn and empathy felt, they are still ‘other’. And we were by no means the first to have had their Bedroom Tax story featured on TV.

It was bizarre to find that we were the ‘lead story’ on C4 News that evening [11 July 2013], with demonstrations in Egypt ‘relegated’ to second place. Was our story that important? I can’t answer that.

Neither Sue nor I were subscribed to Twitter. When Jackie Long got in touch the next day, she told me that Twitter was full of people talking about us. So curiosity got the better of me and I signed up to see what was being said.

We were amazed. Here were all these people who we didn’t know talking about us, the majority sympathetic and critical of the Tories’ Housing Benefit cut. There were far, far more people out there who supported us than we’d ever imagined. [Of course there were also some who were less supportive!]

To us, this was just everyday life. Yes, not a particularly nice aspect of our life, but just another worry, another fear, another stress-inducing hassle that we really didn’t need.

Life for us is hard enough anyway, as it is for thousands of other kinship carers around the country. [I wrote a blog-post about this last year]

Apparently the Papworth Trust’s switchboard was jammed by people ringing up to offer us help and support in all sorts of ways. We had been told this might happen, but this was so overwhelming its difficult to describe how we felt. So I won’t!

We had decided that we didn’t want to be told what people were saying or offering at all. That was not why we had ‘gone public’ with our story. We just wanted to highlight the unfairness of the bedroom tax to as many people as possible and then do everything we could to try and help other people in our situation.

A week after our news broadcast, we were featured in the Guardian in a piece by Frances Ryan, again tying in with the Papworth Trust’s report on the impact of bedroom tax. The Western Telegraph, our main ‘local’ paper here in Pembrokeshire also ran an article about us.

The impact of what we had done by going public in such a way finally dawned on us as people approached us in the street, in supermarkets, the hospital and elsewhere. Almost everywhere we went we felt like we were being watched as we spotted people looking at us. People who spoke to us were very supportive of our situation and we always made a point of telling them our situation wasn’t unique.

Meanwhile, we still had to wait for the DHP decision. We had managed [with help from an ‘advisor’], to work out our monthly financial outlay and show how we don’t have £99 a week ‘spare’. Thinking about where money is spent, and on exactly what, isn’t an easy task but, with an assessment tool found on Martin Lewis’s website we were able to provide the required, albeit intrusive breakdown.

We also had to confirm, despite having done so previously, that we still wished to continue with our formal appeal against the original decision: that we were ‘underoccupying’ our purpose-built home.

After the initial post-publicity interest had begun to die down, things began to pick up on the legal front.

Ridley and Hall’s Sangeeta Enright, who had been a real source of support for us during the previous months rang one day to discuss the way forward with our appeal. We were determined to do everything possible to get an exemption from the Bedroom Tax for ourselves and, hopefully, for all other families in our situation.

It transpired that a barrister, Tom Royston of Garden Court North, a Chamber in Manchester was interested in our case and had suggested to Sangeeta that the Child Poverty Action Group [CPAG], may be interested in helping us take our appeal to the highest level. So we agreed to talk to them and listen to their advice.

We spoke about and discussed what CPAG’s solicitor had told us for many hours. We asked other people what they thought. In the end, our decision was that as the DHP award was not permanent, as we no longer felt secure in our home, and as there were other families in our situation, we would fight. We wanted to try and get the law changed for everyone like us.

We gave the go-ahead to the legal team and our fight stepped up yet another notch.

PCC waited until the beginning of August before finally confirming that we had been awarded a DHP. We didn’t realise we were meant to be overwhelmingly grateful to them for this, but apparently we were.

We had a visitor: the councillor responsible for housing at PCC and, curiously, a director of our landlord, Pembrokeshire Housing Association. He told us that now we’d “got what we wanted” [a DHP], there was no longer any need for us to “complain about or criticise PCC” in public, saying that if we had anything to discuss about the council we should contact him and he would “sort things out” for us. Of course, that statement fell on profoundly deaf ears.

Despite having been awarded a DHP by PCC, we still felt insecure in our home. That security had been permanently taken away from us at a stroke by the unelected Coalition government’s legislation. [This excellent blog by Rob Gershon discusses tenant’s security]

The ‘removal of the spare room subsidy’ had filled our lives with untold stress and confusion. Sue’s depression began to manifest itself again as she constantly worried and feared for Warren’s future. She grew ill and confused as to why the government appeared to be punishing her, as she saw it, for looking after a young man who, if we weren’t caring for him, would have to live in a residential home costing ‘the taxpayer’ around £250,000 a year. [figure given to us by our local Barnardos management in 2011]

During the summer, I became seriously ill again, we had problems with carers and it was not a very memorable time. But then, in September 2013, our legal campaign got very serious indeed…

Part 3: The Road to London, will be here soon.

My Bedroom Tax Story – Part 1 | Part 2 |

Warren’s First Ever Holiday – day 8

Kerry Farm, Day Eight – Saturday 21st June, 2014

This morning was strange because Luke wasn’t there, but Nanny gave me my breakfast and got me washed and dressed. I decided not to mess her about today because it was sad that we had to go home.

Thomas and his Mum, Dad and Nan came to say goodbye to us before they left. They told us that Emily had been sick so she had gone home very early while we were still in bed. That was sad.

Gandad and Nanny Sue took all our bags out to my van and put some of them inside. Then I got in and they packed lots more bags and loads of plants around me. It was like they made a wall around me! But I had enough space and could put my feet up on some pillows on top of a suitcase which was comfy.

Natalie, Kerry Farm’s manager came to say goodbye. She asked Nanny Sue if she would like to go back when she can to be a volunteer and help with the gardening and in the polytunnel. She said they all loved Nanny’s bit of the garden!

Chickens inspecting Nanny Sue's work in the garden

Chickens inspecting Nanny Sue’s work in the garden


Nanny was very happy about that and said that when Gandad goes to see old Nanny Norah, his Mum, he can bring her because he passes through a town about 5 miles away from the farm. If he does that, Nanny Sue can stay at Kerry Farm for nearly two days to help them.

Then we left Kerry Farm and Gandad drove us home. It was another nice sunny day and he didn’t drive very fast.

When we got home in the afternoon, we were all happy to be back, but still sad to have left Kerry Farm behind.

Later on, I was sitting outside talking to Gandad. He asked if I’d had a nice time on my first holiday. I gave him a big ‘thumbs-up’ and a massive grin. Gandad asked me if I missed being at Kerry Farm, and if I missed anything now we were home.

So I decided to say something…

“Oh-Ickn!”

I’ll let you work out what I said.

day 1 | day 2 | day 3 | day 4 | day 5 | day 6 | day 7 | day 8

Warren’s First Ever Holiday – day 7

Kerry Farm, Day Seven – Friday 20th June 2014

Today I was a bit sad after Luke and I went to feed the animals, because Luke had to go home. I didn’t want him to go but he had to collect his twin girls from school in the afternoon because they were going to stay with him for the weekend. We all said goodbye and he drove off in Gandad’s car.

Then I went to see Deb and Tyler making a little pen so they could bring the baby chicks and their mum out of the big shed. They let me touch one of the chicks again. I don’t know if it was the same one I saw a few days ago, but it was still fluffy and tickled. But it was a bit bigger. Tyler said that baby animals grow quite fast because they soon have to look after themselves. I think they were very happy to come outside and all the other chickens came to see them too.

Me stroking the baby chicken

Me stroking the baby chicken


Nanny Sue wanted to go to see a garden that Deb and Natalie – the boss – had told her about. So after some lunch we set off in my van to go there. It wasn’t very far away, near a place called Welshpool.

A nice lady said we could go in for free, so I went in the garden with Gandad while Nanny Sue went to explore a bit on her own. There were some paths there that were too steep for my wheelchair and I don’t know if Gandad could go down them either. Even with his oxygen tank he still gets puffed out.

We had a nice time and there were lots of different coloured trees and bushes to see with lttle paths going between them. It was very hot there in the garden, but we could sit in the shade under the trees if we wanted to

When Nanny Sue found us later, Gandad and me went and waited by my van while she went to choose some plants to take home. The lady at the garden said that someone from Kerry Farm had rung them up to tell them that Nanny Sue could have a special voucher to buy some plants to say ‘thank you’ for her work in the garden at the farm. That was very kind of them and made Nanny Sue very happy.

The garden we visited was very nice

The garden we visited was very nice


We got back to Kerry Farm in time for tea. Gandad stayed in with me and Nanny went back out to finish her work in the sensory garden. Then we went out for a while to see what she had done. She had planted lots of tiny herbs and flowers which she said will grow over the paving stones and hide them a little bit. I think the people at Kerry Farm can use the herbs for making their food taste nice. That will be good for them!

When Nanny Sue finished and came back into our cottage, she started packing up all our things because we had to go home on Saturday. She said she wanted to stay there at Kerry Farm really and would be happy to live in the polytunnel. She’s funny like that.

day 1 | day 2 | day 3 | day 4 | day 5 | day 6 | day 7 | day 8