Tag: disabled

So, Still Nothing. TVT mesh saga.

Through frustration and tears I write but couldn’t feel less like writing.

Sounds coming from outside remind me of lives being lived to the fullest whilst I painfully pace the length of the flat to stop my muscles from wasting completely.

In April 2020 the health minister kindly apologised to Polypropylene mesh implant sufferers and promised our care would change. For some people, it has. They’ve been referred to removal clinics and have made a recovery.

Unfortunately, some of us, are falling through NHS guidelines and our GPs seem unable to get us on the correct pathway for treatment. It has now been three years since my implanting surgeon recommended my implanted TVT be removed.

In the past year my dedicated GP has referred me out and seen me returned back to her by three Gynae consultants. I’m so grateful that she continues to understand my concerns and push for me.

I suppose, like any bad conservation job, it’s difficult to find someone afterwards to sort out a satisfactory outcome. The hold up is simply put. There is a shortage of surgeons to remove the mesh.

I’m tired of being in pain. I’m tired of being tired. I’m bored at a level no one understands. I’m frustrated beyond what I thought was possible and I see no end.

What do I see? I see a future of dealing with it.

And, I am starting, just starting to do it.

Before, I was clinging on to recovery and getting my life back again. I’m realising and adapting in my mind to the real fact that I am going to be stuck like this; sat accessorized in adult nappies, lording it around trying to look hot in a wheelchair.

Tears sting my eyes when I say I didn’t deserve this. But, none of us did. The guy who came to the hospital to get his hernia repair, the woman who got her bladder fixed or myself who got the TVT mesh implanted during a necessary hysterectomy, none of us deserves what’s happened.

Of course, in this life no one promised me a life without pain. One isn’t born feeling fantastic. In fact it’s the complete opposite isn’t it? From our first tooth cutting into tender baby gums to our last poop being forced out of a dry arse; life is full of pain.

It’s different when the pain is not experienced by everyone. I’m obviously conflicted on this as essentially, no one promised me life would not have pain.

I suppose I’m saying I need to start getting out, using the wheelchair if I need to, and living my life again regardless of the TVT. There is zero point in waiting for removal as the health services have more important people to deal with.

So, it’s still me and my TVT.

Thanks for reading.

Please Fix The Door

Please fix the door

Make it like it used to

Working, like it used to

We could have a fire

We ought to raise the roof

Seventeen floors of families

Need this fire escape

Our government didnt learn anything from Grenfel

Please fix it before its too late

It’s a year since it broke

I’m fed up of complaining

Time to start shaming

Watford Community Housing Trust

Fix this now!!! You must!

Mesh Days – Poem

I hear the wind

It reminds me of outside

The outside I can see

But cannot be.

It reminds me of friends

Of times gone past

When I danced, socialized

And had a laugh.

 

I breathe in deeply

Try to remember the smells.

The greens, the scents, the stares, the charged air

Walking out in tottering shoes to forget my blues

Between trees, hedgerows and lamp posts

Listening to the cacophony

Query that I heard them at the time

Straining I hear them, I do not see them but

It’s not beyond memory in this history of mine.

 

I watch and check

My envy grows

Fairweather friends

That now I do not know

Their absence long adjusted to

Looking back, it’s what I would do.

 

Friends can’t deal with my selfish greed, my need to be ill.

I can suck the air out of a room in a moment with my sharp tongue

Thankful words stop where thought begun.

For this reason, I stay in bed

So, my evilness can’t be spread

Out of my heart and into my throat

One escape one moment and all would be lost

They would see mediocracy, at my cost.

Me

Not the graceful lady portrayed

But the evil woman, betrayed.

 

Pain and anger blow outside

Bash against my grace

The mirror shows lines

My heart feels the disgrace

I want to shout

Leave me alone, go find someone else

But, immediately feel guilty

Wishing this on someone else isn’t me

There’re no words where I could make people see

The simple truth is that mesh took my life away from me.

 

I’m listening out for different sounds.

I’ll explain it to you

The intercom will buzz, I’ll get a little excited pain because

My meals on wheels is due.

It will be delivered hot and appreciation I will show.

The meal will sit on the side all day and

Tomorrow into the bin will go.

 

The wind blows and gusts, howls past my block

Reminding me anew,

“Cheer up, smile, turn up the charm, there’s still some fight in you”

The slicing pain as I move reminds that I must attend

The sting, the pain, the wipe again, twenty or more times a day

Pain on pin movement, on moving legs this or that way.

Tedious as life could be

Breathe in, be calm, ground myself again.

The wind blows and the rain lashes against the pane.

 

My delusions tell me to “Eat like a bird.”

Wellbeing, they have never heard

What do you do when soul continues to grow?

When you feel wings trying to show?

I look at my dinner, that I managed to plate

There’s still warmth and nutrition

It’s not too late!

I put down my pen, I try again.

I choke on the food.

The tears fall down my face.

Well, that’s ingratitude,

And my hatred starts all over again, not displaced.

 

I stare out the window, searching for the sun.

Calm myself, ground myself

Breathe in the sounds that are near

Life continues outside, this brings me some cheer.

I force down some mouthfuls, with the aid of weak coffee and a smoke

Deal with my own wind and convince myself, I can cope.

 

The day suddenly gets better

A call from my daughter

Can she visit? Would I let her?

The smile that you can’t see is wider than the distance between you and me!

My granddaughter with her will come

And a better antidepressant there is none!

So goodbye dear misery, for today

My life just blew a wonderful way.

 

Ah, discomfort and pain slide insecurity in

Will she be upset that Nanny isn’t better yet?

Oh, delightfully we will play

A new pair of shoes she comes to show me today.

 

I wait eagerly, the knock the on door

To see her bright eyes, smiling as before

A cuddle and a greeting I will get

They haven’t invented a pill yet

That gives you the happiness of love

It’s paid for in heartache in the family abode

It comes back in spades when you least expect

Overwhelms me, yet,

I’ll never take love for granted

My loss had to be done but

Love given out cannot replace wrong

My disgrace is mine and mine alone.

 

I wait for the doorbell, I can hear the lift

I wonder if it who I think it is.

Soon I will hear her laughter

Soon I’ll hear her steps

Soon I’ll get a hug from the best granddaughter yet!

 

How soon the hours do fly past

One, two maybe more, it’s hard to tell

We had a blast

“I’ll miss you loads,” she says

As off to the lift she yells.

My daughter and my eyes do meet

An animated, chatter journey home, her treat.

I press the memory firmly to my heart,

Close the door with blown kisses,

Now, my lonely afternoon starts.

 

The end.

 

By Samantha unextraordinarybint Harris. Written 27th July 2020 at home in Watford, Herts. UK.

 

 

 

Mesh? TVT? The Right to a Full Sex Life.

Trans-vaginal tape is the term used to described the plastic mesh placed during bladder surgery. It is basically a strip of unfinished plastic mesh just like below. It is placed around the bladder in a special procedure using long needles and brute strength. 

TVT is usually implanted to help secure the bladder against leaks of urine, it is used as a sling between the pelvic bone cavities. It was ‘designed’ to support and lift. It cuts off the flow of blood, urine and feeling to the area depending on it’s position. The loss of flow is intermittent, so one can go from calm to complete groin spasm in milliseconds.

So this, one second it’s fine then spasm, starts an onset of unbearable urgency. It gets so unreliable that eventually you are either unable to urinate or can’t stop urinating! Also urination becomes extremely painful. It is a similar situation with sexual performance.

 

Above is a picture of the mesh which was installed into me – as you can plainly see it is the same polypropylene that fishing nets are made from (link below). That is the same polypropylene which they say is dangerous for our environment and marine life (link below).

It has caused a lot of damage to the human beings it’s being installed into.

This is mesh plastic, very useful stuff but unfortunately toxic.

 

There is an alternative operation. There is no need to maim people. This plastic mesh surgery is just a new version of an old and well practised operation to help women after childbirth. The old operation was successful for hundreds of years but took more time.

In the past, Colposuspension was the most commonly performed operation for the treatment of stress urinary incontinence. This is a major operation that requires a general anaesthetic. The abdomen is opened and the bladder neck is lifted upwards by stitching the lower part of the front of the vagina to a ligament behind the pubic bone.

I was given TVT suspension during a hysterectomy to remove my womb and the plastic mesh was heat sealed inside me as you cannot sew stitches into it. This was all performed under general anaesthetic.

It was years before I clicked I’d been duped. Although there had been immediate problems things felt different as I no longer had a womb. So, you could say that I was fairly satisfied. Believing that my continual bladder and bowel problems were normal after a hysterectomy and to be fair, I was told they were normal by my GP.

However, approximately ten years after implant I started to have continual vomiting. They diagnosed Chronic Vomiting Sickness. But, numerous other, now called ‘mesh related’ symptoms appeared too, other auto immune problems. 

The Gynaecologist didn’t tell me TVT mesh may trigger a reaction with my body. I was not told it is a poison which leaches into flesh over time. I was not told it is only guaranteed for fifteen years and then they didn’t know what would happen! This is something to consider if you are offered plastic mesh for any invasive procedure.

Being around noise of almost any level began to hurt, affecting my ears and jaw. I started to not be able to attend my normal social events or even restaurants. Now, fifteen years later, I cannot eat food I used to because I can’t chew for long without it affecting my ears.

My ears now suffer from constant hypersensitivity.  I became reactive to nearly all my medications and unable to eat an ongoing amount of foods. Constant urinary tract infections with blood constantly present as well as other less describable things.

This has to be said, sorry I’ll say it as delicately as possible but basically my back end and front end started behaving erratically. It started to get difficult to sit comfortably. I kept getting cystitis without having had vigorous sex.  My GP sent me to the sexual health clinic although I told him I’d not been able to and even brought along the boyfriend!

They sent me back stating I did not have an STD. I officially complained then spent next few years having investigation after investigation. Not one consultant or hospital told me that it could be the TVT mesh. However, it is continually mentioned on my surgical notes.

Now I have learnt that it was a plastic mesh tape of device. I know that some plastics harden over time and can become brittle. Once the chemicals holding them together have been leached into the surrounding body the plastic mesh starts to disintegrate.

Fifteen years after implant I am rarely able to have sex. If I do the only position achievable would be missionary and then I cannot abide any pressure on or in my pelvis at all. Now, where is the joy in that?

Being a confident woman I liked being on top and used to enjoy the freedom that my extra flexibility gave me. However, it seems the TVT plastic mesh does not allow for too much movement so it’s lie back and stare at the ceiling.

Being so flexible was doable when I could keep my muscles strong. Not so if you are stuck at home waiting for the NHS to remove something they never should have placed in you to begin with. Muscle wastage is a real problem as walking is not possible. Typed through gritted teeth…

I am being truly honest when I tell you I was looking forward to years of guilt free, mature, steamy, sex as not having a womb I wouldn’t have to worry about contraception. Ahhh, how naive was I?

Anyone reading this should understand the kind of money involved in this plastic medical mesh industry. Last year the industry was worth 6.7 billion dollars. If you are considering mesh implant for hernia or pelvic surgery you will be told not to take any notice of people like me. You may even be told there is no alternative.

You will be told that the problem is minor and that the sufferers blow their symptoms up for attention. I know this as daily I read a Facebook page called Slingthemesh. It’s a support group. Generally it is full of heartbreaking stories of the mesh maimed.

Perspective patients come into the group, they tell us that they’re offered this treatment and what they have been told about us. I’m just going to tell you that there are millions of sufferers of TVT, TOT bladder sling, hernia mesh, pelvic prolapse mesh blanket, mesh tape and other new names they are thinking up of to stay ahead of the law suits.

You are not going to read very many personal stories about how the mesh has affected it’s victims. Most victims being too embarrassed or completely unaware of why we are having the problems! Some have won massive payouts and are not allowed to talk to public. Most victims don’t have a blog where they can share.

Having always had a varied and satisfying sex life it is a shock to be without it. Of course I get on with my life. There are much worse things. I’m thoughtful of the fellow souls in a similar position for the same or different reasons. But understanding it doesn’t mean I have to like it and put it with it in a gracious manner.

My membership to Kestrels goes unused and my right arm is killing me.

I’ve checked my rights and I’ve no right to sex but I have the right to express my sexuality. That’s nice but not helpful. In the mean time I’m thinking of doing a critique of my favourite porn videos… and the lack of choice from a female user of the industry.

Ah I just came across a blog page funded by super big organisations telling us their plans to dominate the hernia ‘industry’ be careful out there folks!

Thanks for reading.

http://www.toxicswatch.org/2008/11/toxic-leaching-from-polypropylene.html

https://www.memphisnet.net/product/4040/nets-seine-knotted-9  (industrial use mesh)

https://www.cbsnews.com/news/johnson-johnson-agrees-to-117m-settlement-over-pelvic-mesh-devices/

http://inthesetimes.com/article/13353/a_female_surgical_nightmare?

https://www.cbsnews.com/news/johnson-johnson-agrees-to-117m-settlement-over-pelvic-mesh-devices/

https://medicalxpress.com/news/2018-07-surgical-mesh-implants-autoimmune-disorders.html

https://www.drugdangers.com/transvaginal-mesh/brands/

https://wordpress.com/read/blogs/161987861/posts/29642

 

Having a Bath – Disabled Health Advice

Here in the UK disabled people are rather bullied into giving up their baths in favour of showers. This is regardless of what their disablement is. However, the benefits of bathing have been known for millennia. One could pay a fortune to go to a spa or you could have the common person’s alternative.

For me, I’ve just the same danger of falling in a shower than I have of falling in a bath. So it it’s definitely worth the risk of the bath because I benefit from the bath, where the shower is just anxiety and not beneficial to pain relief, it just cleans me.

So, the following advice is how I get around all these little problems and bathe as safely as possible, whether it will be suitable for you or not I cannot tell. I can tell you that I am a fifty year old woman who has taken herself off Tramadol, and many other life limiting pain killers in favour of more natural methods.

I have Ehlers Danlos Classical cross over Hypermobility with some Lung and Heart incidentals such as MVP and Bullous Lung Disease – I have more things to cope with but these are the conditions mainly affected by temperature and/or standing for any period of time. I also have spinal pain and internal damage which is helped by the thermal properties of water.

It’s strange that I have to sit here really to justify the use of a bath but that is the world we currently live in. The UK claims constantly it is short of water, although we are an island with many fresh water rivers. And although it rains all the bloody time here, the water companies have managed to convince us to use less and for years I did.

Many people will correctly point out it is possible to sit down on a shower seat. If you’ve ever sat down on a shower seat and applied any type of soap you will know it’s very slippy so it also carry risks. There are straps (sometimes fitted) but they don’t make you feel secure and it is very stressful thinking you may slip.

Caution is always a key consideration when bathing and I am not saying you should bath – especially if you know or your carer knows it’s really dangerous for you. What I am saying is that with good organisation a bath could be had which could benefit a sufferer of aching joints, bad back or skin complaints.

It is also very good for calming the central nervous system if you are anxious. If I am having a bout of Chronic Vomiting Syndrome there is nothing which will halt the retching other than a bath or being out in the rain…although the rain could just me.

Here is my bathing advice.

Having a Bath When You Have Health Considerations.

Preparation For Disabled Independent Bathing

Change all shower and shampoo bottles into a container with a pump action. This will make it is easier for you to gain soaps without straining yourself. You want a bath to be relaxing. This is about bathing being an aid wellbeing.

Pump Action beats the old system for disabled use.
Advice for disabled or anyone having problems with opening shampoo bottles. Change to pump action.

Make sure your pain patches (if you have them or HRT patches) are placed on your upper stomach or arms where they will not be immersed in the hot water for a long length of time – hot temperatures could affect the rate of patches absorption. If you have a pendant alarm put it near the bath but not somewhere will it may get wet.

Put, flannel, towels and things you will need next to the bath, where you can reach them from sitting in the bath easily. This may mean bringing a small stool into the bathroom, if so place it near the bath on a level surface – then it can be used when you get out of the bath should you feel you need it or have mobility issues.

If you have incontinence issues then please ensure you have your pads and underwear somewhere nearby too…nothing worse than doing that just after you bathed and have already let the water out.

Prepare the bathroom with your clothes or something warm to put over you in reach from the stool. For me, I use a thick dressing gown, and have hooks nearby the bath so I can reach the items from the bath without having to strain or stretch.

Does your bath have rails or something else to help you get in and out of the bath? Seriously consider whether you will be able to get in and out of the bath with the things available to you in your own bathroom.

Get rails added – they make a huge difference to how secure you feel. If you cannot for whatever reason look for other options. How close is the sink? Is it possible this could be held on to – if it doesn’t look strong enough don’t do it.

I slide out over the top of the bath tub and onto a stool on days when I’m too faint to stand and hold the rails. However, I am currently underweight and slip around easily, if you are overweight please consider that this could be too much effort for you so install a hoist for your safety or configure a way to ensure you are able to get out safely that works for you.

My method of bathing involves allowing all the water to drain away when finished before attempting to get out of the bath. There are several reasons for this. One is that it allows my temperature to come down and my heart rate to steady. Two is that it is hard to pull yourself out of water, more effort is involved which can make breathing difficult. And three is the bath is less slippery with no water in .

Another benefit of draining all the water is it enabled you to pull a towel in with you before you get out of the bath without it getting soaking. This way I can start drying myself and wrapping my hair up before attempting the move and keep myself warm.

I’ve been asked what I put in my baths. Quite often just water but I do swear by Epsom Salts for proper relax and a bit of rosemary. The salts help the hot water get right into the skin for deep thermal healing. They also draw out any impurities in the body.

These salts have been very important for me. They have a great property for drawing out things like disposable stitches before they become cysts. Whether that is the same for others without EDS I cannot say.

However I will warn you not to use too much Epsom salts in the bath or use them too regularly as they can dry the skin out a little too much. Also, if you have any sort of implant (I have bladder and rectum implants) you will find the area aching afterwards. Whether it’s the salts action on the implants I do not know however, this feeling is reduced if I only use salts once a week.

So there you are, please take my advice or leave it. I feel once you have rediscovered the wonderful feeling of hot water seeping into your joints and driving away your pain, if only for a few minutes, you’ll be hooked on taking a bath rather more painkillers.

Please remember that preparation is key and enjoy the joys of hot water safely.

Meshed, Mad and Horny.

Fancy Someone and Disabled with Mesh? Me Too.

I have a smile on my face. I feel younger. I’m pretty sure it’s because I found I want to be close to someone. We’ll meet again soon and there will be no doubts, no strained small talk because I bit the bullet and straight up told him, I couldn’t get him off my mind.

It was a huge risk. I don’t like rejection, but he’d gone out of his way, just for me, so I had an idea I was putting feelings in the right place. Now, however I’m thinking that telling him was the easy bit. I’m thinking should I actually consider involving someone one in my misery.

Fantasy, of course, is one thing and reality another. When you embark on a new sexual relationship the ideal would be to do so in wild abandonment, to throw caution to the wind and let our bodies take us where they will. But already, I am worrying…

Several conflictions now in my mind. The least of which is the TVT mesh medical device implant. The mesh was put into me before the medical establishment really understood the female anatomy (2005) and sensations are hit and miss. This is hard to describe to doctors who just don’t understand female orgasm or its role. For instance, I told my gynae I had lost feeling in my rosebud and he said,

“Oh no, it’s fine. It all looks very pretty down there.”

There isn’t much you can really say to that is there? This is like only having a cheese knife for soup. You may decide you are not hungry after all. After many hospital appointments and different treatments, I’m now waiting a removal specialist although I am not on any list as a list doesn’t exist.

The manifestation of the mesh’s impact itself in my life is more than annoying and usually very painful. Imagine, if you could, having a piece of serrated tape threaded through your genitals to your spine and then back again. That is what the surgeons did to my poor fan.

There are days when I cannot think of anything else other than my groin. If I stand up straight, it pulls across my bladder, if I sit down it pulls across the top of my pubic bone. As I walk it, I feel it most, it moves in sawing motion through my insides and squeezes my bladder painfully.

The movement happens without me thinking about anything arousing so imagine that going on down there when sexy thoughts start. It’s tormenting. My brain is now on the desperate longing stage. I’m longing to smell him and touch the skin beneath his clothes. I want to lie in the smelly warmth of our mutual want and kiss every millimetre of his manly frame. I’d like to worship his essence…

So now I’m tending to shift around quite a bit in my seat, moving my weight from one side to another. I do this in an attempt to take the sensation away, just to give me a break from it. If it were a penis, I suspect it could be like having the life sucked out of you by someone with sharp teeth when you are also desperate for a pee. It may be nice at first but claws after a while and quickly becomes unbearable.

Whilst I am desperate to jump on my new adventure and ride to wonderland, I am also very aware that medically I’m not allowed to ride a bicycle let alone a man. Previously I’ve only been able to achieve unison in missionary position and disengagement was both dicey and painful. This plays on my mind.

Of course, I know, in my grown up, adult world, that I can discuss all this with my prospective lover. I know he will understand and be mindful of me. I do have faith we’ll find a way around my insecurities because intimacy does make me feel great. Life has few free pleasures. I’m determined to enjoy the flesh to flesh experience for what it is, joyful.

I’m determined to be close to another. I need and deserve it. Note to self, not to sound too desperate. I realise that someone permanently by my side, fighting my corner and supporting me is a fantasy, but a kiss and a cuddle isn’t too much to hope for. As a woman I need to feel wanted and needed…I believe men feel this need too. It is a human need and one I cannot live without.

Regardless of the emotional and physical pain I’m looking forward to getting to know my new lover. He has already given me hope and a real feeling of security by just being in my life. Yes, I’m still scared of what the future holds for me but now there is a slither of excitement running through my day and nights. Who wouldn’t want that?

This plastic mesh embedded in me, bleeding its carcinogenic poisons into my body, has taken so much from me I cannot allow it to take passion too. I think about the future scared but now there is something unknown, something enriching for me on my horizon. A man 😉

Equality In Housing Allocation In UK

I have been trying to get this story out for a while but my emails are returned to me from the police and from the special fraud squad.

I highlighted inequality in our housing system towards disabled women and women as they are both protected groups under UN convention.

The housing trusts are Homegroup, Watford Community Housing Trust and Tamil Housing. These are the only ones I looked at. But all three broke the rules on housing allocation.

At what point will the government deal with this problem?

Building more private housing on over populated pieces of common land is against our laws.

There are huge areas of england available for building projects- to keep building on the same spot of land is not sustainable and against our laws.

Perhaps someone could send me the address of special fraud squad because I’m tired of my emails being returned.

Dear Charlie, We Don’t Have Cladding.

ImagineaToweringInfernoInMundenview?withthenewfiresprinklersystemitcoulAtuallyHappenAndIWantToStopTheAbuseOfChilrenNowAndAbuseOfMenandAbuseOfWomenHappeningOnEarthAndAlwaysSaveTheAnimalsBecauseWeAreAllBests

BeingJudgedIsHorribleAndNowIsTimeOfJudgeWeUseThisMomentToReflctOnOurLivesPurpose


Thank you for taking the time to respond to my questions regarding the retrofitting of fire sprinklers in Munden View in Watford, the block I live in. There is no gas allowed in the block, so it is all electric with decent RCD cover. It has no cladding.

I would like to take WCHT up on the offer of thermal imagining to ensure that the system that the fire bridgade has suggested is suitable for my flat in regards to the temperature trigger of 58 degrees.  It does get exceptionally hot up here. It’s one of the reasons I love it and most normal people would hate it.

The imaging is a great suggestion and the next two mondays I’m back at hospital but otherwise I am usually around and can be reached on all the contact details they have at the office for me or on this email.

Two inspection staff from WCHT come up this week. One of those unannounced visits that feels like a drugs bust they did a flat audit, to make sure I wasn’t subletting.

What a coincidence that the police just popped by the day before – just to see how I’m doing. It would be so easy to lose objectiveness when you feel you are being bullied. Especially having mental health issues. It would be so easy to become paranoid.

The threat of legal action and costs really helped. I do feel suitably comforted into allowing you to enter my legally let property and fit a fire sprinkler system that I do not want or think necessary as this tower block does not have cladding.

As WCHT inspection staff were here, checking my id and looking around, they saw the ceilings and understood my concerns.  So perhaps things are being dealt with. With the water damage from the roof we do need to ensure these bonded ceilings can take the continual load of the weight sitting in the system pipes.

The stay put policy, during a fire, is one I’m quite happy with. I was more than happy to move into the block. My professional experience has given me the knowledge that should the compartmentation be solid a building can have an extremely safe record of withstanding fires. It should be remembered that this is an extemely safe tower block and does not have cladding.

It is good to know that the fire brigade are so involved as it is them who need to control water supply. It has put my mind at rest that they had such a large input in the choice of the design for the fire protection these large tower blocks.

I spent some time removing access cabling from the flat when I moved in last year. I was concerned that should the cables fall they would block my only exit. I did have similiar concerns with the pipes for the fire sprinklers, as I am in a wheelchair.  I see that these things are all going to be looked into which is good to know.

You tell me that the fire sprinklers will not cost the tenants anything on our service charges – thank you, this is reassuring.

Your suggestion that I leave the flat whilst the fire sprinklers are fitted is an obvious one and I thank you.

I’m not sure where I would go for such a long time. Three days.  I’m hoping that the WCHT staff who came up yesterday could see that my situation is such I would not be medically facilitated for in most places, or indeed comfortable. I’m very aware, that with my conditions, being here would be impossible while it’s being fitted without heavy ear defenders for the diamond drilling at the very least. I believe human health and safety requirements demand that much.

Your answer regarding the appearance of the installment of the fire sprinklers is not yet answered. The actual installment looks very different from the show flat installment which some tenants saw but others who requested to see were not able. So, although I did promise not to continue to ask more questions I feel that requesting that you respond to this is not a new question but one already asked so I request, respectfully, that it is answered

I would still like the main fire doors between the floors fixed properly, as they blow open in the wind from the ‘air’ window in the communal area. It is very likely that this would fail in a fire. This is the only exit route. It is important. It is also a primary measure as mentioned in the fire report which ought to be done before secondary measures like fire sprinklers.

It should also be pointed out that several tenants pointed out the danger of what was happening when the cladding was put on Grenfell. They were bullied into accepting it. The tower block did have good fire safety record before it was refitted by the council. I asked you for the name of the system being installed in Munden View. You sent me..

Code of practice BS 9251:2014 gives recommendations for the design, installation, components, water supplies and backflow protection, commissioning, maintenance and testing of fire sprinkler systems in domestic and residential occupancies. These systems are primarily intended for the protection of life in case of fire and have additional benefits for property protection, environmental protection, sustainability of buildings and continuity of use, and firefighter safety

I copied and pasted it here, directly as it was in your email.  I’d like to highlight another point. You say that this ‘system’ has additional benefits, one of the listed is environmental protection – but the system you are installing is plastic conduit, boxed in with large amounts of untreated MDF.  Should the system fail, the environmental impact of the burn, fueled with the polyethene fillers would increase the environmental impact considerably.

Should the water supply fail to the block – as it has several times, and a fire take hold – the holes, plastic tubing, MDF and broken compartmentation would facilitate the burn up through the riser to every floor.

With access to the building becoming a problem most days – the traffic from the hundreds of new houses making it hard for ambulances to attend the tower blocks. This is something I have raised and have been told to be patient about.  I am failing to understand how the fire brigade would deal with a fire here or turn the sprinklers off should they be accidently, maliciously or purposefully triggered.

I am yet decided as to whether to include the name of the fire sprinkler system supplier. I suppose that will depend on what the job looks like and whether the installation in my flat leaks. I’ve heard others do presently.

Thank you for pointing out how important my flat is to the schedule of works. However, there are residents who have taken time off and arranged with your office to let the operatives into their homes so that they can fit these fire sprinklers.

One resident has done this three times now, and the workers haven’t shown up on the day arranged. These residents are just as important and shouldn’t have their time wasted in such a manner. It does seem silly to keep knocking on my door with no appointment when the operatives are not attending the confirmed appointments they have.

There are no questions in this email other than the one regarding the look of the installation. As you and David Wright made it very clear you do not want emails going to and fro. I leave this with you. As I say please do get in contact regarding an appointment for the thermal imagining detector.

Kindest regards,

Disabled Living in Beautiful Hertfordshire – Ring of Finite Burden

Grab yourself a cuppa for this one and settle down for an informative read. I’ll try not to be too boring. I warn you that I will go on about my medical issues for a while but then it becomes more relevant to any disabled persons in general as I will discuss the housing allocation service and benefits. Thank you for reading.

One of the main points of this statement is to say we do not have a housing shortage. We have corruption within our councils regarding allocation of housing. This is on a huge scale and the councils are aware of the problem and are hiding the fact they are incapable of monitoring the housing associations and different groups given access to our social housing stock.

Admitting I claim full housing benefit and Universal Credit in Hertfordshire is a risk. There is a real disgust of disabled people and anyone claiming benefit. Every eighteen months or so I fight to keep my Personal Independence Payment although I do qualify for it on many different grounds.

I’ve not always been this disabled. I used to run a modelling agency in Watford. Appearing on TV with famous people like Jodie Kidd. Strutting my stuff and showing teenagers how to do the walk. I got huge debts, mental health issues and had some medical physical problems. Eating disorders were becoming fashionable and I fell out of love with the industry, it had to close.

I didn’t stop working though. I retrained at West Herts College. Becoming a qualified electrician, I now hold City & Guilds certificates in electrical installation and engineering. I have toiled alongside men from all around the world whilst on construction sites. I helped install electrics on projects such as the Samuel Lithgow Youth Centre in central London.

I’m now going to be big-headed and also claim that I can read music and play the guitar. Having mainly taught myself I’m not great but I have performed in Charter Place and Watford Pump House singing. A woman of many talents and master of none.

I can no longer do any of those things. Medical devices put in me to save time in theatre at Watford General Hospital and through St Albans City Hospital have caused an autoimmune response. It affects my eyes, ears and maybe the reason I can’t even shift simple fungal infections. Dr Hextal, I’ve spoken with other patients of yours…it’s not just me and they too have the strange fungus.

The devices are causing a great deal of pain. They are around my bladder and rectum. I’ve been complaining about them since they were put in, in 2002. I wasn’t informed at all about the Stapled Hemorrhroidopexy and have never really recovered. It’s been a slow decline. The last few years involving giving up work altogether, now sat on full benefits because the NHS refuses to do anything other than get paid for not treating me.

I wasn’t really suitable for the devices. I was born with lung disease and a very small defect in my heart. I have an underlying condition called Ehlers Danlos and had extensive endometriosis before the hysterectomy. There were no follow ups for either devices fitted, no follow ups.

The NHS trusts just moved me from one hospital to another. Thankfully I found a TVT bladder sling support group on Facebook and became a little more informed. Now I am angry. Doctors never swab me. However, they have been eager to examine the area physically regardless of my pain level. Now that I refuse examination this is noted on paperwork clearly and is always mentioned in letters.

My nhs medical files are huge and I look incredibly ill on paper, but if you saw me on a good day, unless I was in my wheelchair and/or using my stick you wouldn’t know. I present well. I put my best face on however, I rarely leave the house.

I haven’t had a good day this year yet. It’s March. It seems silly but I cannot stand any pressure on my body – shoes, tight clothes etc So I prefer to sit in very loose clothes at home near a loo. If I go out I wear a large pad. The NHS will not help with the cost of these so they are used sparingly.

I’m heavily medicated with Fentanyl and OxyNorm but try not to take too much as my mind is the only thing which works – well, as long as I have HRT it does work. I was told this week, by my chemist, that because of Brexit the NHS has run out of my HRT so I’m in a rush to write this lol.

I have to argue for most of my medication and have given up asking for certain prescriptions. I suffer from POTS when I’m not well. Any sort of physical effort can cause faints. So even pushing out wind can make me pass out, so I must keep my pain medication as low as possible for my own safety.

I moved recently to a lovely new home. I wasn’t able to climb the stairs in my old house. The situation had become quite sad. My wonderful daughter helped me move my bed downstairs. I could then get myself something to eat, answer the door and look out on the garden.

There was a toilet downstairs with a tiny hand basin. As I had a downstairs toilet it was considered to be ‘level access living’. As both my children had left home, I requested that I be downsized to a smaller property as I was falling foul of the bedroom tax.

I wasn’t using upstairs; three bedrooms were lying empty. Occupational Therapists, Care Workers and my doctor wrote reports supporting the move. I was put on the bidding system. As I was under fifty, I wasn’t eligible for a bungalow.

The bidding system was strange. It was only accessible online. You could only bid via a computer not a phone. I could bid on what they put up for me to bid on. I put a bid in for a one bed flat opposite my GP. I waited eagerly to hear if I would be moving to something smaller and more manageable. I got turned down because I owed £73 rent.

I phoned Three Rivers District Council to complain about housing allocation, I was told they didn’t have a line for that. I asked if I could complain over the phone about how I was being treated. I was told they don’t have a complaints department. They have 160 staff. By law they should have taken the complaint down on the phone. However, I did follow their rules and after much effort produced a fair and reasonable complaint.

Three Rivers District Council made me email the complaint to their enquiries line.  The council upheld the position that I didn’t need housing… I got to complaints stage two before giving up. Health and housing situation just took their toll on me. It was also very embarrassing. I felt that the office staff would read about my complaint. I was just trying to move into a home more suitable for me and challenge a housing benefit decision.

I was using the Homeswapper page, for social housing tenants and was on the council bidding system. Eventually I did find an exchange, outside of their systems, on Facebook and moved home.

Giving my three-bed house to a very lovely family who had been stuck in a two bedroomed flat was a good feeling. They were overjoyed. Some families had offered me money to exchange with them, the situation desperate – but I felt if you are able to offer me thousands of pounds why do you need the property? I’m judgemental like that 

In total it had taken me two and a half years to move home. I was pleased to be away from Three Rivers District Council but I didn’t want to leave South Oxhey. My daughter is there. As soon as I moved into my new home they put an eviction notice on me because of rent arrears. I tried to point out I’d just moved in.

Universal Credit payment didn’t come straight in for my rent. It had been misallocated to another rent account before getting into mine to pay the rent. WCHT knew the reason for the late payment but still attempted to evict me. I think this action was appalling. I am thankful to still have a roof over my head.

Thankfully a charity called HertsMindLink helped me. I ended up paying an extra weeks rent but at least I’ve still got my home. Although they are refusing to remove the order which doesn’t feel very secure, I’ve called discrimination against disabled people. They didn’t accept that. 

I worry if I were to go back into hospital. I must stay well so I can fill out the forms, so I dont’ lose my home. If you don’t phone in for your benefits they will get stopped. You have to be ‘proactive’ for the current benefit system under Single Fraud Investigation Service.

But disabled people are supposed to be Protected Under UN Convention under Anti-Discrimination and Equality Laws. These laws state that any organisation over fifteen people must provide access to facilities and services for certain protected groups.

Disabled people are one of these groups. As such they are to be given assistance in achieving equality. Funding ought to be allocated accordingly by Governments and Local Authorities. The UK ratified this treaty before EU law and as such sits within The Equality Act 2010 in UK law.

For instance, ‘Age’ is a protective group, as is ‘Disabled’ and ‘Race’ – so it is appropriate for our local council to send out extra literature to ensure that no one is being discriminated against when they go for housing, education, healthcare or any other service with the borough.

Extra literature may be printed in different languages or leaflets sent around old folk’s homes to ensure they have access to a complaints line, healthcare services and leisure activities within the borough. This ensures their quality of life mentally, socially and physically.

Article 6 specifically deals with women with disabilities. It says clearly, they should be given specific consideration.  Disabled women fall under ‘Disabled’ and ‘Sex’ brackets of protection under the same laws as a non-English speaking, disabled person who would come under the protected status of ‘Disabled’ and ‘Race’. Some disabled women fall under three or four categories as they may be old and English not their first language.

Generally the laws are used to stop discrimination and ensure equality for everyone living in the borough (and those ‘visiting’) with services and facilities.

Watford Borough Council tend avoid the term ‘Sex’ and use the word ‘Gender’. I will continue to use the term ‘Sex’.  Gender in itself is protected under the laws for those whom have undergone sex transformation.

Councils do have to prove that they are monitoring the services they provide. This ensures that equality laws are being adhered to. So when I look through the councils reports and see that they are not making any allowances for disabled people to assess housing, I feel concerned.

The main areas of consideration for extra funding has gone towards ‘Age’ and ‘Race’. This isn’t me being paranoid, you can see them yourself as they are still up on their council pages. I’ve done the research.

In June or July 2014 TRDC implemented a plan to catch fraudulent claimants of housing benefit. It was called SFIS or Single Fraud Investigation Service. The scope of the experiment was to catch people claiming housing benefit illegally. It was put over all HB claimants, disabled people were not excluded.

It was just after the implementation of the bedroom tax in 2012 who to any single mum with children coming and going was a nightmare. They put the rents up the area. The job centre sent my son for work at UPS they gave him a contract for full time work for 15 hours. UPS and government think that 15 hours is a full time job – that is why employment figures are down.

My son had trouble giving me anything for keep as his journey from South Oxhey to Watford took up most of his pay. I had to prove all this. I was continually under investigation. Being asked over and over again for the same information.

I wasn’t well but I was running a little market, one day a week. Also I tried to bring in some money by selling things on ebay but it wasn’t enough to cover rent and live. The council would not make up the shortfall, but according to their rules they should.

Then the council told me they had overpaid me but I knew that I had told them every coming and going. I knew I had not claimed anything fraudulently but they are making me pay it back. It has bugged me that this amount, in total £3500 has gone down as me claiming illegally.

Since they implemented the SFPI the council have found a few fraudsters. There were higher value frauds discovered before the implementation though. Now the council are doing single fathers and mothers for hundred pounds of fraud. Before they were catching whole families and council workers who were creaming off thousands. Last year they clawed back just £400,000.

However, one benefit assessor in London was able to get away from over £1million. So why are TRDC concentrating just on housing benefit claimants? Newham council are investigating a £9million housing allocation fraud instigated by some of the council workers themselves.

My benefit assessor was Jan Dobrowolski. Who is Jan Dobrowolski? The only person around here with that name seems to have died in 1975. His grave is in Welwyn Garden City. Perhaps the police could look into that?

It all makes, what is left, of my sphincter grate.

The only Jan Dobrowolski I can find online who could have a link with the council works in mathematical modelling at Leeds University. He has heavy links with Ireland and Pakistan. Could it be the same person? The one thing this ‘scientist’ is working on is the ‘ring of finite burden’. Coincidence? It would make a good spy thriller!

There is something smelly in Three Rivers District Council and it is no longer me as I now have access to a bath. There is something smelly in Herts County Council and Watford Borough council where the housing and facilities are concerned.

But right now we need to make sure that equality rights for disabled people and women are upheld. By doing so we are really protecting the most vulnerable amongst us.

 

 

 

How Does a Social Housing Estate Work in Herts County Council?

I would like to know what Watford Community Housing Trust, who are a co-op, are doing about all the complaints they have received about the enforced housing development and the parking? Especially the lack of health & safety regarding traffic flow and parking on the Meriden Estate.

Munden View and Abbey View towers don’t look great from the outside but the flats are lovely. Ideal for me as there is no garden to be maintained, a rubbish chute, community central heating and dedicated parking outside. I love my flat but there are a few problems with the management.

They have disabled parking at the front. I am able to park and roll. I can wheel over the car park, through the electronic doors, into either of the two, newly refurbished, lifts and up to my floor. It’s all one level. It has a great view over Watford Mirror Print building, the GP surgery and I can see up to the Harry Potter Studio at Leavesden.

At the front of my tower block is a disabled space. Everyone parks in it, usually it isn’t a problem. Only over the past few months it has become a problem because of all the workmen using the parking and the increased housing stock. Residents and visitors must use the disabled bays as there isn’t enough parking, especially at the front of the towers.

The parking was adequate for blocks built in the 1960s when most occupants didn’t own cars. The 180 flats have just eleven spaces allocated at the front of the block.

There is also a yellow crossed ambulance bay – the one at the front is continually blocked by needy families or disabled people. Taxi drivers drive into the only available access and wait. They are waiting for residents who need them but just one car takes up the only assessible area.

A resident, desperate to get an ambulance to get to her sick Dad was trying to move the taxi. This causes friction. The issue is that the road was blocked so easily by one taxi. The waiting ambulance then started causing traffic problems down Garsmouth Way. This has major road works on which the residents already have reason to be unhappy about.

I often park around the back as there is no space at the front. It is security detailed by ramp gates and key fobs. I discovered I couldn’t get out of the car park because the exit ramp was broken and I had to just go back home. I called Watford Community Housing Trust.

The customer services assistant told me to use the entrance ramp but to ‘be careful’– I didn’t bother telling her I was disabled and unable to move that fast.  I felt she had given very poor advice for anyone. Ideally the entrance ramp should be left down if the exit ramp is broken. WCHT were considerate to then send me a text informing me that the ramp was broken.

When I tried to complain to the council about the disabled parking and ambulance spaces not being enforced, I was told that it’s WCHT land and their responsibility.  I spoke to the local councillor for the ward and was told that they’ve sent over eighty emails to WCHT regarding the parking for the towers and, also, about the lights around the estate.

Disabled people are protected under UN convention under Anti-Discrimination and Equality Laws. These laws state that any organisation over fifteen people must provide access to facilities and services for certain protected group, including tenants.

The UK ratified this treaty before EU law and as such sits within The Equality Act 2010 in UK law. It gives rights, in law, to certain groups. They are known as protected groups.

Disabled people are one of these groups. As such they are to be given assistance in achieving equality. Funding is allocated accordingly by Governments and Local Authorities. Feedback is supposed to be gathered for any services they provide.

I feel that Watford Borough Council should take it’s responsibility towards disabled people more seriously and uphold the law. We have a right to proper unrestrictive access our homes whether that is in social housing or private. We also have a right to give our feedback so services can be directed correctly towards those in need.

It appears to me that some simple changes could make a huge difference to traffic flow and parking on the estate. The towers surely must come under some consideration with its positioning between the M1 and M41 and having just one small access road. If an incident were to happen how would emergency services get to the location?

I would request a visit from the Health and Safety executive and the Highways Agency and their input on the access and parking situation. With special attention to disabled access and the ambulance bay.

As a last request could you explain to me why, when you do enforce a disabled parking bay with a ticket, in other parts of the borough, it’s only a £20 fine rather than the usual £60? This hardly sends the right message.

Yours sincerely,

Samantha Harris