Stressful times with DWP…….

Update 14th November 2016

@raspberrytalk status from Saturday

Brown envelope just dropped through my letterbox from DWP. Been drea...ding this since my home assessment 25/10/16. Hands were shaking as I opened it ...... 35 points for care and 22 for mobilty!!!! OMFG! I am stunned. Enhanced rate for both. What a great early xmas present. And all it took was my wife screaming and stressing for a home visit with constant phone calls to the DWP and Atos (I can't use the phone!), getting our MP involved and having a massive panic/anxiety attack on the day and self harming that left blood pouring down my arms! I would go out an celebrate if it wasn't for the fact I can't go out much and being around people terrifies me!

Update 5th October 2016

Update on ATOS and DWP for anyone that is interested, wrote to our MP had nothing from her at all. She obvisouly does not give a hoot anymore she's got what she... wants now. thanks @patel4witham
Spoke to the PIP Customer Relations guy and he informed me that there is nothing coming back from the specilsts and anything that is coming back is just saying not been treated here since 2012. Nothing from Dr Castle, so much for his surport, G.P has only sent letter of surport of a home visist. DWP are now passing the blame back to ATOS by saying it's because of one of there Healthcare Proffessionals that hubby has a caution on him and this is why they will not do a home visit.
Writen back to DWP about this, waiting for response, the guy from ATOS was very suprised when I told him what DWP have said.
I'm really concerned that we are going to have to attend the Re-arranged assessement for hubby next week, I just know it's going to end up with a trip to A&E.............stressed

Update 16th August:

PIP form has arrived today and giving hubby untill 10th september to return them.

Any regular readers of my blog know about the problems both me and @raspberrytalk have had dealing with the DWP. We had a 2 year long battle with them and even had to go to a tribunal so @raspberrytalk could even get his DLA - being treated like a common criminal, basically branded a liar - this also ment I could not recieve Carers Allowance! When I did finally recieve it they did not give me any back pay, so again we had to write to them argue the fact that it should of been back dated like the DLA. This did get sorted but all this stress took its toll on both myself and @raspberrytalk.
I do also think all this stress has been a contribtunting factor in causing mine and @raspberrytalk relationship to become so fragile and broken.

For those of you that are not regular readers it would be worth you reading this post (The Day my husband became a child) as it will help you understand how much stress the DWP cause and how that stress affected my husband's mental state.

So now fast forward to present day and, as some of you may or may not know, DLA is being changed to a new allowance called PIP. We received a letter asking if my husband would like to claim PIP on 23rd July (letter dated 19th July) - I really don’t understand why we get these letters so late…
Anyway, because this letter had arrived on a Saturday there was not much we could do because the claim line is only open Monday - Friday.
The letter says you HAVE to phone them to start the claim. I was not happy about this because @raspberrytalk does not use the phone due to severe anxiety and other mental health problems. I also have mental health problems that make it difficult for me to use a phone. So as you can imagine my stress and anxiety levels went very high because I knew I would have to phone the claim line … I’m not confident using a phone either because I do avoid using it, but if I really have to I do.
@raspberrytalk could see the state I was getting in because I would have to use the phone. It’s not an easy thing to explain how and why I get in such a state about using a phone, so I’m not even going to try. I've always been like it since I was a kid.
To cut a long story short @raspberrytalk went on the DWP website and found out that you can send in a written request for the PIP claim forms. Fantstic! So we sent the letter which was signed for on 26th July. It was now just a case of playing the waiting game…

1 week went by and not recieved anything.


Week 2 went by and still not recieved anything.

Meanwhile, as we were waiting, my anxiety and stress levels were steadily increasing to breaking point. I have been so stressed it caused me to have a spell of IBS and feeling sick. It has also caused @raspberrytalk to have a bad spell of IBD. It has also caused strain on mine and @raspberrytalk relationship.

Then we received another letter on 6th August (dated 2nd August) saying that they had not yet recieved a request from us to start a PIP claim.
As you can imagine this caused myself and @raspberrytalk even MORE stress! As a lot of you know @raspberrytalk has a lot of mental health problems and all this stress is making him worse. It is also taking it’s toll on me and having to take care of @raspberrytalk is becoming more and more difficult for me to deal with … sad but true.

So I caved. I had been throwing up because I was getting so stressed waiting and on 10th August I phoned because we still had not recieved anything, except for the letter saying they had not receved a request for PIP.
Even though I was calling on @raspberrytalk behalf, they still demanded to talk to him saying they couldn't complete the process otherwise. I managed to coax him into saying yes when needed, although he was in a right state ..... how do they process claims for people that are unable to talk?

So anyway, after weeks of stress and anxiety it was finally sorted ... or so we thought.

Guess what arrived today (13th August)? The response to our original written request! The request forms needed to request the PIP claim forms (dated 7th August). Yes, you have to complete a claim for in order to get the PIP claim form!

So it only took them 3 weeks to send the request form, which is basically the exact same thing that the lady on the claims line went through with me … word for word. Well at least the claim process has now been started ... but why on earth do the letters arrive so late and why are all other benefits going online, but not PIP? When hubby first claimed for DLA it was an online form, then a downloadable pdf .... and now they pigs ear of a joke. Apparently the actual claim form is 40 PAGES of questions and there is no downloadable version of the form, so all answers have to be hand written! Let's hope all these sick and disabled people don't make any mistakes! How long would it take to get another copy of the form!!

I really want to write a letter of complaint, but I know this would be pointless to do because the @DWP really are not there to help people and they just don’t care - because they are told and paid to not care. Because it is run by the goverment and they pull all the strings and are killing people because of the stress they're causing people. And people are commiting suicide because of what the @DWP put them through - and I know the @DWP will deny this, even though it was proven in court!
@DWP have caused so much stress in this house which caused me and @raspberrytalk to have a massive argument yesterday. It resulted in @raspberrytalk cutting himself with a carving knife (thankfully just a scratch as he could barely hold the blade), becoming aggressive with me and when the aggression passed by he ordered me to leave so he could kill himself. This is something he struggles with everyday, like his Rage Control outbursts - which are scary, but he would never hurt me - but each time this happens it damages our relationship.
So thank you @DWP for coming so very close to making us split up and making me so ill this last 3 weeks and making @raspberrytalk even more ill than he is already ……


Help with our Garden PLEASE!

Help with our garden PLEASE!


Looking for a little help ....

***UPDATE 27/07/16***

We're pleased to say that we raised enough from our crowd funding to get the ramp extended! Just 3m of concrete, but it will change both mine and @raspberrytalk lives.
Our gratitude goes out to everyone that donated. Thank you all so much!
Raspberrytalk and I are looking (begging) for a little help.
This is the ramp that the council installed for my wheelchair. Hardly subtle! It is a terrible eye soar in our rustic little village :(

It took over a week to build but, since having it installed, we have not been able to use it very well.
While the ramp itself is ok, the problem lies with where the ramp finishes … right next to the side of our car. When it was finished, we never realised what a problem it was going to be until we first started using it with my wheelchair.

The problem is, when in my chair, my wife can get me to the drivers door of the car, but then has to struggle carrying the folded chair across the garden to the boot. If I am being put into the passenger side, it is extremely difficult to get my chair up the ramp kerb and across the garden, in order to get to the other side of our car. In rainy weather this is awful because the grass is sloped and becomes slippery and muddy. It also means that all of our visitors and delivery people coming to our front door have to walk across the garden to get to the path. This is terrible for my mum, who is also disabled and walks with 2 sticks. She has slipped and fallen in the garden several times.

We have tried parking in a different location, but it just means that someone else then parks in our normal space and we have the same problems.
The council wont change it because it was agreed at the time (but like I said we didn't  realise what a problem it was going to be). They say every time we change driver we should just drive the car out, turn it around and drive it back in!

What we want to do is extend the path to the left so it is possible to get my wheelchair to the back of the car and allow others to get to our path without walking across the garden. It only needs about 10ft. We would also like to add some trellis and climbing plants (like jasmine) to the railings to try and hide the ramp from view.

It may not seem like a lot, but being on benefits this is not something we'll ever be able to afford.
Please help a little if you can and share our link wherever you can.
Thank You.
Carer's Vent & Raspberry


The C Word……

So, as a carer you can sometimes have some very scary moments. For example seeing your loved one having a seizure, or hearing a doctor say that your husband needs to go on the suspected CANCER list!
As I heard those words my heart started pounding and I turned to the doctor and said Shit!
He said “Yes, shit indeed”.
I suddenly had this horrible feeling that I may lose @raspberrytalk. I know Cancer can be managed/treated these days and it’s not always a death sentence, but my mind just rushed to worst thought ever - especially as @raspberrytalk had been hiding his symptoms from me for at least 2 years and as you all know with CANCER time plays a big part … so you can see why I thought the worst.
Even though @raspberrytalk was sent for testing to make certain very quickly, for both of us it has seemed like a very, very long time. It has been a very stressful couple of months and I really don’t want to have to go through that kind of scare or stress again. I also don’t want @raspberrytalk to have to go through any of those tests or stress again – any of you that have ever had a colonoscopy will know what I’m talking about.
So, near the end of February We heard the C word and we finally received the test results letter in mid April saying that @raspberrytalk had been taken of the suspected CANCER list.
Yeay! You can’t even imagine the relief I felt. Of course @raspberrytalk just looked at me and said “I told you it wasn’t CANCER”. Seems like I had more of a scare than he did.
However the letter did confirm that @raspberrytalk has Inflammatory Bowel Disease and if you read any info about this you will see that symptoms can include :-
  • painful and swollen joints (arthritis)
  • mouth ulcers
  • areas of painful, red and swollen skin
  • irritated and red eyes
  • shortness of breath
  • a fast or irregular heartbeat
  • a high temperature (fever)
all of which @raspberrytalk experiences, amongst other things.
As horrible as it is for @raspberrytalk having this disease, it could explain some of what he’s been going through and most likely has been contributing to all the other problems he has in relation to his ME/CFS and Fibromyalgia.
Both Ulcerative Colitis and Crohn’s Disease are long-term (chronic) conditions that involve inflammation of the gut (gastrointestinal tract). Thankfully @raspberrytalk does not have Crohn’s which can eventually KILL YOU(!) because of the complations it causes. He has Ulcerative Colitis, which is not nice and does cause complications of its own, but appears to be the lesser of two evils.
I’m thankful every day that @raspberrytalk does not have CANCER and think we should be counting our blessings.

Take care of each other
Carer’s Vent

Just as a side note, one of the tests @raspberrytalk had was an ultrasound on his Gallbladder, as they wanted to check that wasn’t the cause of the bleeding and stuff. All clear, but the lady doing the test did notice something on his Liver, but the ultrasound proved “inconclusive”.
So they sent him for a complete CT scan with contrast injection (that left a lovely bruise!).
We’re still waiting for the results, so the stress and worry begins again … or maybe never stops!? …...


In Sickness and In Mental Health

How my husband looks today
Our Wedding Day

My husband before he became ill

The following blog post was originally written for Men Tell Health after they had seen another blog entry I had written YEAR OF HOPE 2015. They asked if I could write something for them, about caring for my husband who has developed mental health issues/conditions.
I think most of you know me as @carersvent. But my real name is Samantha and I became my husband’s carer back in 2011 after the physical health problems he had been hiding from me for years finally became too much. He suffers from Chronic Pain, ME, Functional Neurological Disorder and early onset Arthritis. The list of symptoms go on and on, but after constant pain, these cause him to fall, have dizzy spells, muscle paralysis, muscle spasms, seizures, etc, etc.
What I didn’t realise was that he was also hiding some severe mental health issues too.
I’d always known that, like myself, he struggles bouts of depression. In fact in 2004 he left his job as Senior Store Designer for a well-known supermarket after what I can only describe as a mini breakdown. At the time I thought it was just the pressure of his job had got to him. Little did I know that his depression was far more severe than that and he was struggling with thoughts of suicide.
Within weeks of becoming my husband’s carer it was clear to me that it was more than his physical health, but also his mental health that he was having problems with. I’ve always thought of my husband as being very strong, confident and having a larger than life personality, but I had also seen another side of him where he would verbally attack me (I will talk about this more later).
So it took me by surprise when my husband started having major panic attacks! I don’t know how, but I somehow pushed my own surprise, fear and emotions aside and just took charge. It wasn’t really a conscious choice to become his carer, it was just what I did without thinking as there was nobody else.
I think the most extreme example of him having a panic attack was at his ESA Assessment, My husband went through what can only be called a range of emotions, which included him trying to harm himself, crying, screaming, shouting, laughing and being terrified. To me he always looks like a lost child when he gets like this. It does shock me seeing him like this, but I simply have to put that aside and take care of him.
When he gets like this I usually talk to him in a calm and reassuring manner and tell him “I won’t let anyone hurt you”. If you saw me doing this you’d think I was talking to a child and not a grown man. It’s sad how mental health can change someone you love so much, but you have to remember that it should never define them. They haven’t chosen to be this way.
My husband also suffers with severe anxiety and when it gets really bad he will harm himself, either by scratching his arms or bashing his head. I do my best to stop him hurting himself but, unfortunately, this can sometimes be difficult.
Whenever I have to take my husband to appointments I have to watch him constantly for signs of anxiety, panic attack and self harming. As if that wasn’t enough, he also suffers from non-epileptic seizures, so I also have to watch out for signs of those too…
I’m sure you’d all agree that trying to cope with all that is enough in itself, but my husband also has a very dark side to him. This is something I have had to deal with ever since I’ve known him (nearly 20 Years). He suffers from what we believe is Intermittent Explosive Disorder. We call this part of my husband Rob. This angry, arrogant person is the complete opposite of my husband. He’s very aggressive, verbally abusive and always wanting a fight. He never listens to reason and is very good at seeing your weak points and turning them against you. He’s the most spiteful person you will meet. He can be violent, like hitting walls, bashing furniture and throwing things (like cups and glasses at walls, etc), although I should make it clear though that he has never and never would hit a woman. It can be like flipping a switch, but you never know where the switch is or if it will trigger anything.
I would honestly have to say this is the most difficult, frustrating and confusing part of any of my husband’s mental health problems I have to deal with. Unlike his anxiety and panic attacks which I can usually deal with, this darker side of my husband is something I really wish I could just walk away from … but I can’t.
My husband was diagnosed with the Cluster B Personality Disturbances with Rage Control issues. Basically this means my husband is not constantly like this, but flips in and out - which sort of makes things difficult for both of us to cope with to say the least!
Yes, knowing my husband has Cluster B explains some of his problems but not all of them and having a label on it doesn’t make having to deal with it any easier.

Cluster B Personality Disorder includes:-

Antisocial Personality Disorder: characterised by an ignorance of the entitlements of others, the absence of empathy, and (generally) a pattern of consistent criminal activity.
Borderline Personality Disorder: extreme ‘black and white’ thinking and long term unstable emotions – particularly when involving relationships, identity and behaviour. These feeling can lead to both self-harm and impulsive behaviour.
Histrionic Personality Disorder: attention seeking behaviour that often includes inappropriate seductive conduct and superficial or inflated emotions.
Narcissistic Personality Disorder: characterised by the consistent need for praise and admiration and a belief that they are special and ‘entitled’. Extreme jealously, arrogance and a lack of empathy are also usually present.
Since 2011 my husband has been seen by 5 different psychiatrists (including 2 neuro-psychiatrists) and 3 psychologists, some of whom said they couldn’t make a full assessment of my husband because of his rage control issues. But they have suggested that my husband also has “prolonged” PTSD - which if you saw what my husband has been through does make sense (since he was a kid he’s had close friends die, his 1st marriage broke down, several near death motor bike accidents, etc ….).
So, how has all this affected my own health/mental health? Well I’m on medication for anxiety because I have stress induced migraines. I have also developed something called Vasovagal Syncope, which basically means if I get too stressed I can pass out. I also suffer with depression and OCD, which gets really bad when I get stressed out.
I have also been diagnosed with Fibromyalgia, which I am currently not even being treated for, which is frustrating. I also experience hallucinations, which I’ve been told are caused by stress as well. Unfortunately with the life I have there’s no easy way to have less stress in my life….
I do struggle to take care of my husband, especially with the mental health conditions and I do sometimes wish someone else would take over. Then I feel guilty for wanting a normal life and I also ask why all this happened to my husband!? Yes, it’s difficult for me, but just imagine being my husband having to deal with all those different parts of himself and struggling to keep the dark side of himself from coming out and sometimes it will come out and there’s nothing my husband can do to stop it. He then feels all the guilt for whatever he said and did (he doesn’t always remember) … and all this on top of his physical health problems. He is basically having to battle with himself everyday and some days he doesn’t win.
Last year, after being bounced around psychiatrists and psychologists (because all his physical problems are apparently in his head!), we were eventually given some couples therapy. Why? Because being my husbands carer and having to deal with his physical and mental health conditions has put a tremendous stain on our relationship. We’re both grateful we received this, but my husband desperately needs help with his rage control issues. We were told to contact Mind, but unfortunately they no longer offer help for this.
So what next? I really don’t know … but what I do know is that my husband needs some professional help with all his mental health conditions, but sadly I don’t think he’ll ever get it on the NHS.
Sometimes I look at my husband and don’t even recognize him because of what his mental health has done to him. If he has a good day I get a glimpse of the man I fell in love with, but unfortunately those days are very few - which is sad and makes me want to cry because I want my husband to be the way he once was ..


YEAR OF HOPE, 2015……….

I think it was back in late 2014 that @raspberrytalk got to see yet another psychiatrist, but this time the guy seemed not to be shocked when @raspberrytalk had an outburst (punched the wall!). He also seemed to have a very thick folder full of all the reports done on my husband by other head Drs. I think this folder also included all other medical reports done on @raspberrytalk, which me and @raspberrytalk were supprised by. After what seemed like forever of talking to this head Dr he said he could see me and @raspberrytalk needed some kind of help. He said he’d talk to some collegues of his and get one of them to meet us at a new appointment. Both myself and @raspberrytalk felt that finally he would be getting some real help with his mental health issues. He was not offered help before because of his rage control issues, but this new head Dr was prepared to see past all of that and try to find a collegue who was also willing to help.
It seemed like ages before the next appointment. I was sort of looking forward to this one because I felt like it was the start of some real help for @raspberrytalk, which would also mean less stress for me. Having to deal with @raspberrytalk outbursts is very stressful and always takes alot out of me physically and mentaly. I was also hoping he’d get help for his panic attacks and anxiety, which were both getting worse and I was struggling to cope with @raspberrytalk when he had these spells.
The second appointment seemed to go well and both head Drs seemed to want to help. The second head Dr wanted to make another appointment so me and @raspberrytalk could talk in more detail about @raspberrytalk medical history and anything else he felt would be relevent.
@raspberrytalk and I were understandedly frustrated with the fact we’d have to yet again talk about stuff we had already spoken about with other head Drs. It seemed as though that all we ever did was talk with these head Drs and then never got any further. However, this time seemed more hopeful … or so I thought.
I think it was late April 2015 before we got to see the second head Dr again. @raspberrytalk was very anxious during the whole appointment, he even started scratching his arms and making them bleed. I kept trying to stop him but, even with me doing this, he will still do it. The head Dr even spoke to me and asked some difficult questions, which I answered honestly and I even ended up crying. By the end of this appointment the head Dr said he thought we needed joint treatment because from what he’d seen and heard it was clear that what was happening to @raspberrytalk was affecting our relationship, which is true. Being a carer for my husband has changed things and having to cope with his mental health problems has put a serious strain on our relationship. The Dr said he would talk to one of his collegues - for God’s sake! How many more head Drs did we have to see before we got any help?
By now I was getting so frustrated with the fact that we had to see so many different head Drs, but I was also feeling a sense of hope and thought we were really going to get the help we so needed.
So here we go again with the telling of @raspberrytalk medical history and any other relevent information. This usually takes up most of a session. The new head Dr seemed more interested in what I saying rather than @raspberrytalk, she was basicaly a family/couples therapist. @raspberrytalk said to me “you know this is going to turn into couples therapy”. I told him maybe not.
To cut a very long story short, we must have had at least 6 sessions with this lady and everytime I mentioned getting help for @raspberrytalk Rage Control issues the subject was avoided by them and not spoken about. It was at this point I started getting a sinking feeling because I was realizing @raspberrytalk was right and all this lady was doing and offering was couples therapy.
I think it was at our 5th session that she admitted she could not help with the rage control issues and gave us a contact number for MIND. Well I contacted them and they no longer offer help for anger management either. However, they did give me a few links to some local therapists, but they all charge for their time which we can not afford on benefits.
I can’t even begin to tell you how frustrating all of this is for me and @raspberrytalk. I had really hoped 2015 was going to be the year we got some proper help for him. I feel like the whole year was wasted and I also feel like the system has failed @raspberrytalk once again. Unfortnately it’s only going to get worse with all the cuts to the NHS and benefits. I’m really at a loss as to where to turn or who to talk to next.
Well, at least we got to have a holiday last year … but even that ended up being a disappointment … just read this and you’ll know what I mean.
The couple’s therapist has now signed us off and we are still struggling with @raspberrytalk rage control issues, panic attacks, agoraphobia, PTSD and anxiety as well as all his physical problems. Just what the hell do we have to do before we get some proper help? … I am really struggling with dealing with his mental health issues. I don’t want to sound selfish but, I have my own health issues to deal with too ...
Anyway, I’ve written to our GP in desperation and hope that he will be able to help or at least be able to referer us to someone who truly can help. I only just sent this letter so it’s a case of playing the good old waiting game …… which, to be honest, just frustrates me even further.

Take care of each other
Carer’s Vent



A while ago someone suggested that all us carer’s should write down what we do. Basically a job description, which I thought was a good idea and it’s not until you write it all down that you realize how much you actually do as a carer.
A while back I had to write down and explain everything I do for @raspberrytalk for a letter I had to write in support of him to get his DLA. It surprised me how much I actually do and how many of the things I do without realizing I do them (sounds strange I know but it’s true). For example, making sure that @raspberrytalk does not drift into a road/person when walking.
Also, while writing the letter, it made me see that I do things that I never thought I'd ever be able to do. Which also made me realize how much being a carer has changed me. It’s made me stronger and more assertive when I needed to be; I’m normally not an assertive person but, when it comes to being a carer, I am. Sometimes I read my old blog entries and think I'm reading about someone else entirely. I’m sure other carers will be able to relate.

DESCRIPTION: Looking after the physical and mental health and well
being of @raspberrytalk.
  • Administering First Aid when required.
  • Administering Medication
  • Assist with getting in and out of bed
  • Assist with dressing and undressing
  • Assist with personal care and hygiene
  • Offer mental stability and point of focus when required
  • Lift off floor after a fall or seizure
  • Assist with walking
  • Watch for changes in behaviour and act accordingly
  • Maintain a safe environment  
  • Take care of nutritional needs
  • Provide encouragement with simple tasks
  • General house work including making beds, tidying,
  • washing up, laundry and cooking meals. 
  • Assist with feeding when required
  • Take to appointments and chaperone
  • Collect medications
  • Help with completing forms
  • Managing finances

I have probably forgotten loads of things, but this is all I can think of at the moment.