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It’s fine UK, there’s no need for ESA or PSD…

I’ve moaned many times how disgusting I think it is in regards to assistance dogs and psychiatric illnesses in the UK.

From anyone outside of the UK, especially those in America, let me explain:

  • In the UK you CANNOT get Emotional Support Animals, that is animals who are classed as being comforting to their owners, and are allowed in ‘no pet’ housing, and usually on planes. We don’t get that in the UK, ESAs don’t exist here.
  • On top of that the UK does not allow psychiatric service dogs (/psychiatric assistance dogs). Physical disabilities mean you can qualify for an assistance dog – which is the same as a service dog in that it is trained do tasks to help the handler, and can also legally access anywhere; cinemas, restaurants, shops etc – but there is nothing in place for people with mental illnesses to have a service dog.

I’ve talked before about the various ways a dog could help people with a mental illness. Here’s a quick recap:

  • Body blocking; sitting in front of handler to prevent people getting close
  • Circling; as above but the dog moves around the handler
  • Interrupting behaviours, be they alerting to anxiety (eg. trembling, jittery legs) or interrupting self-harming behaviours
  • Comfort and DPT
  • Bringing items – medications, mobile phone etc
  • Retrieving help from other people in the house, if handler is in crisis

And of course a dog’s presence out in the world and in the home can be very helpful to someone suffering from a psychiatric illness too.

That’s just a very brief list of a few ways that a dog can help, off the top of my head.

Quite frankly it is absolutely ridiculous that the UK does not acknowledge the fact that there is a need for assistance dogs for those with mental illness, and that sufferers could benefit hugely from this.

I’m writing about this because our recently adopted dog, a Chihuahua x Dachshund who had been abused the first 7 months of her life, has completely changed my life.

She started off as a trembling wreck, and it was weeks before she would come to us for contact and we could stroke her. It was months before we could walk her other than to just take her to the toilet, and weeks after that before she stopped trembling when people walked on the opposite side of the road to us.

Watching her grow in confidence has been a beautiful experience, but she has brought so much love into my life…she’s my little shadow!

And thanks to her, for the first time in months, I am able to go out on my own, to walk her.

True I don’t go far from home, I’m only ever out for about forty minutes…but for me that is HUGE! I have found training her phenomenal – it motivates me, it makes me feel useful, and it gets me thinking. Focusing on her during our walks is extremely helpful; it means I don’t give into the paranoia / psychosis regarding other people we see out and about, and when she reacts to noises or people, it shows me they are real.

I now take her most times I leave the house. She walks with us and, when it’s too busy for her (because she’s nowhere near bombproof, she’s still learning to trust the world) I have a dog bag that I can carry her in, and that’s wonderful too as the physical contact is very calming.

With her I have walked through town four times (it was something I hadn’t been able to do in months), I’ve ridden a bus, AND walked around a supermarket carpark as my partner went inside to buy things. We walked about and did training, and there was such little anxiety on my part…the supermarket used to be such a huge trigger for panic attacks!!!

Case in point, I’ve just come back to this blog several hours after beginning to write it, and it’s been an awful several hours. I was sat here crying, and my dog comes and sits on my lap, and I stroke her and cuddle her and s-l-o-w-l-y start to feel just a little better.

So here’s what I’m doing.

I, and a small minority of other people in the UK with psychiatric disabilities, are training our own dogs to perform tasks and help us both out in public and at home. Now obviously these dogs, stupidly, won’t have the same rights as service dogs – but they will help us.

We need to buy vests and patches, that state our dogs are working and are not to be disturbed, because just like registered assistance dogs, our pups need to focus. It’s critical they aren’t distracted by people trying to pet them, because they are doing an important job and they are saving their handlers’ life everyday.

I’ve been doing a lot of work with my dog, Pixie. We are at the very, *very* beginning of our journey. We are working on heel and focus, sit stay, down stay, watch me, settle on me, interrupt behaviours, under (go under my legs as I’m sitting on a chair) and her starting in the right position.

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This is just the tip of the iceberg in terms of training.

Most physically disabled handlers that have assistance dogs have a lot of help training them. I have nothing. Thankfully I’m fairly experienced with dog training thanks to my other dogs, and I know about behaviour, clicker training, shaping, luring etc. I’m at an advantage but it’s still a looooong road.

And after all the training, and after all she helps me, we still won’t have any more rights than your average untrained pet dog :/

But worse of all is being called a faker.

There seems to be articles published weekly about ‘fake service dogs’ (that is, service / assistance dogs that aren’t registered), and how disgusting their owners are, sticking a vest on their untrained unruly dog just so they can get them into places and can take their dog with them wherever they go!

Hatred comes from newspapers and handlers of service dogs alike, and I can understand how incredibly annoying it must be and how damaging fake service dogs can be when they are out of control – they must give businesses a really bad impression! – but not all unofficial service dogs are out of control, and their handlers aren’t always doing it for malicious reasons.

My dog really helps me. She means I can leave the house and go to busier places without suffering a panic attack or triggering an episode. She helps me when I’m at my worst. I am not calling her an assistance dog because I ‘want to take her places’, I’m calling her an assistance dog because SHE IS ONE, I just can’t register her!!

With most assistance dogs, the handlers get lots of help training them – in fact in many cases the dog is completely task trained before given to the handler.

Obviously when I don’t qualify as having a disability that could benefit from an assistance dog, I’m not going to get a pre-trained dog! So alongside the difficulty of everyday living, I also have this huge task ahead of me training my dog. From scratch.

In addition to basic obedience (sit, down, stay, recall, loose lead walking) there are so many extras we need to work on to the point where nothing could distract us:

  • Be able to walk past any person/s without showing any interest
  • Be able to walk past any dogs without losing focus
  • Be able to be calm and focused around all other animals – cats, squirrels, sheep, rabbits, at zoos, farms etc
  • Be able to remain calm in any shop (pet shop, shops selling food at ground level, shops full of shopping trolleys and screaming out of control kids etc etc)
  • Not only be able to remain calm in that environment, but to focus on tasks too
  • Ride on public transport whilst remaining calm and on point; this involves things such as…
  • Ignoring people
  • Getting used to the noise and motion of transport
  • Learning tuck / under (sit out the way) and other positioning
  • Be able to hold a down stay the entire journey, no matter the distractions
  • Be able to ignore all the utter morons who try stroke service dogs, pet them, call to them, bark at them etc
  • Be able to cope with automatic doors, elevators, shopping trolleys, check outs, intercom messages, ignore dropped food etc
  • Learn all the behaviours you want your dog to be able to perform – DPT, interrupting various actions, blocking by positioning body in way of other people, circling, fetching items etc etc etc

It feels VERY overwhelming.

Most service dogs trained by professionals have 12-24 months training, who knows how long it will take us?!

I’ve really enjoyed our training so far and I’m so incredibly impressed with my pup. I have this awful tendency to expect too much from my dog, and get frustrated with her when she ignores something I’m asking – even though 99.9% of the time it’s MY fault, because I’m expecting too much too soon!

In the 3 months we have had this dog she has changed my life so much. Now that I take her almost every time I leave the house, my anxiety has fallen right down, and even when I’m struggling with my mood or psychosis, I’m better able to cope. In the house I’ve had a lot of panic attacks, moments of intense sadness, crying etc – and every time she has helped me, and calmed me down, and got me back on track.

I can only imagine how much she will help in the long run.

This has been a really long, jumbled, messy post. My head’s quite messy at the moment and I’ve been writing this post for the past two days, so it’s all…weird. And it’s 5.30am in the morning, I can’t sleep, so obviously that’s a great time to edit and post it XD

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Mania’s not always fun

I’ve only been manic 17 days so far, it could last a lot longer, but I am *so* done with it…

The lack of sleep is becoming an issue.

My partner is missing sleep, because he is my carer and has to be awake to make sure I don’t spend all our money (why yes, I am an impulsive dick, thank you!), but the lack of sleep and being constantly on the go means he gets tired by about 7pm in the evening.

I get really frustrated because I don’t ever want to go to bed, and if he’s having a cat nap I have to agree to stay still and do one thing (ie. listen to five songs on the Ipon whilst colouring and he should be awake by the time they are finished) and it’s so hard for me…Gog has a really hard time reminding me and getting me to understand that he is not manic, he gets tired – it is ME who is having unusual amounts of energy, not him who is unusually sleepy!

I told someone else recently, I suck at empathy when I’m manic >__<

I had a really crap night’s sleep last night, about four hours and I haven’t slept properly for several weeks now, and I don’t understand it…yesterday was my most un-manic day in 17 days, so why have I woken so zingy and manicky today?!

I rated yesterday a 6 for my mood (0 = suicidal, 10 = manic & psychotic), a 7 for feeling calm & relaxed, and a 7 for being able to sit still. These are significantly calmer than all the other 12 days on my mood chart.

Seventeen days where the most I have slept is seven hours, and I usually fall in around 4-5.5 hours. I am going to have missed out on so much sleep and be so exhausted by the time this ends, and it infuriates me!

I’ve also spent way, way, waaaaaay too much money 😦

I’ve managed to blow several hundred pounds, and we only just built our funds back up after having nothing. FUCK.

Even my partner having our bank cards doesn’t help because I find things to buy online when he is out the room or napping…I’m so certain it’s a good idea and I NEED to spend money – I really wish the automatic saving of details on sites such as amazon and ebay didn’t mean I could buy things so easily, I never used to know how to do it…

My partner is gently trying to get me to agree to have the sites blocked on both my laptop and the PC, so I can’t buy things as only he knows how to block / unblock them, but I love looking for stuff that interest me. Finding cool dog toys or training tools on amazon / ebay is one of the few things I can focus on, it’d suck if it had to go because I’m an impulsive idiot…

I just want to start an anti-psychotic that could a) get rid of my psychosis, and b) help me calm down and reduce my mania…please NHS help me for fuck sake!!

I can’t believe the nearest GP appt I could get was the 11th March – and that was booked over a week ago. I’m sat here, skin twitching with agitation, and I could cry with the frustration of it all *sigh*

People think mania must be so enjoyable…news flash: it’s not!

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We are forgotten

Gog here.

I have been trying to get Anon help, desperately, since around September. At first I had to persuade her she needed help, and that it wouldn’t be too scary to ask for it. That took a long time.

Then in early November we saw our GP, who referred us for an urgent psychiatrist appointment.

When we didn’t hear anything for two months I contacted our GP again, and finally Single Point of Access got in touch. We made an appointment, only to find out it was with a nurse, although they said we could see a psychiatrist immediately after it.

Remember, a psychiatrist is the only person who can prescribe the medication Anon desperately needs.

At the appointment we were told the service no longer had a psychiatrist, so there was no chance of us seeing one. The nurse we had the appointment with said she would phone us in a week’s time (that would be the Tuesday of this week) to let us know where she had managed to get Anon help, and when we would be seeing a psychiatrist.

Guess what? Tuesday came and went, and I heard nothing from her.

If I sound bitter here, or annoyed, it’s because I am.

I know for a fact Anon can’t cope much more. Imagine constantly seeing, hearing and thinking terrifying things that you really believe are true. Imagine feeling so terrified almost all the time that you can’t eat, can’t sleep, can’t talk, can’t leave the house…can’t even feel safe inside the house! And I feel horrible because I can’t help her, and I am struggling too…obviously not as much as she is but it’s hard.

The nurse didn’t ring on Tuesday. She didn’t ring on Wednesday; and she didn’t ring today. I’m annoyed because she seemed so understanding. She really seemed to get how difficult our lives were and she seemed trustworthy.

I phoned the service today at 4pm and said she was supposed to ring and hadn’t, and I was put through to her. She said she hadn’t rung because the meeting where she was going to talk about Anon with other services was cancelled…I don’t care, you should have phoned me to let me know that – we are hanging on by a thread and you are the only thing that can help us! It’s not okay to just not ring.

She seemed to have forgotten the severity of our situation when we spoke on the phone. She asked how Anon was (I replied that everyday was a struggle & her psychosis is constant), after a brief talk she asked if I was worried about Anon’s safety. I told her, yet again, that I am with Anon 24/7 to ensure she is safe. She can’t hurt herself because I am there. If I wasn’t watching her she would be dead by now.

The nurse said she will ring us next Tuesday. Sounds familiar. Tuesday is a long, long time away.

I phoned up Crisis Team again (was it Sunday or Monday?) and they weren’t at all helpful. I’m now phoning the GP to make an appointment with them, because we need help. I am tired of saying it.

We need help
We need help
We need help
Anon needs help
Help us

Nobody picked up at the GP surgery.

Our local surgery is so impossible to make appointments with, and if you go in to make one it’s still a huge wait. The last urgent appointment I could get for Anon was a telephone appointment and there was still over a week’s wait!

I have a GP appointment next week (only 1.5 weeks’ wait) to sort out my medication for mild-moderate depression. It’s very sad and absolutely disgusting that I will be seen, treated and on medication before anybody will help Anon…I have moderate depression and she is experiencing psychotic symptoms every single day!

I am furious. Where do you go for help??

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So many emails

Anon’s carer here.

Things continue to be the worst they have ever been, although Anon doesn’t seem quite as desperate today.

So many hours over the past week has been spent with Anon crying hysterically, it has been very distressing. I’ve spent the last few days emailing everybody I can think of (Mind and other mental health charirties, CAB) asking for advice and information about various things.

The charity Bipolar UK really helped us last time Anon contacted them, and gave us lots of really useful information. I’m hoping they can help again.

I’ve been looking into advocacy, to support us at appointments. Anon is not in a good place  for appointments, and even I can be intimidated by Doctors and Social Workers, and find it hard to tell them when they are wrong, or not understanding the situation (which happens all the time).

It would be really helpful if we could get an advocate to talk to us beforehand, so they knew what we were going through and what we want, then sit in appointments and help speak up against the Doctors.

I think it might help Anon feel more secure, but I’m not sure if we’d qualify for an advocate or how to get help from one.

Just waiting for about a dozen email responses…

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Hello Doctor, it’s me again…

Tomorrow I’m phoning our GP again…he’s going to be sick of hearing from me.

I’m going to ask if there would be any way he could either be there with us at the appointment for the psychiatrist, or if the psychiatrist could meet us at the GP surgery. Or what about having a video chat with the psychiatrist in the Doctor’s room?

The issues with the appointment with the psychiatrist is going to be:

–> We will get the letter in advance, which means more time for Anon to get stressed and work herself up over it (that seems to be belittling the problem, she won’t just be ‘a bit stressed’, she will be flat out terrified)
–> The appointment will be with a psychiatrist that Anon hasn’t met before and we don’t know anything about them, unlike with the new GP where we fished about for the most gentle and understanding Doctor
–> The appointment will be in an environment where Anon is going to be extremely uncomfortable, either an entirely new place or somewhere with bad associations
–>A GP appointment lasts around ten minutes, whereas a psychiatrist appointment usually lasts at least 45 minutes, and sometimes longer than an hour

I don’t know what is possible, or what they’d be willing to do, to make things easier for Anon…but surely something has to be possible?

Things seem to be going to shit left right and centre at the moment.

As Anon would say, “it never rains but it pours.”

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We’ll see you in a week’s time…or tomorrow!

Today was the day I bit the bullet and called Anon’s new GP back, whether she wanted me to or not – she would never be comfortable with me trying to get her help, and she does need it.

I spent a while reassuring and calming her, but when I called the surgery and then again when the GP phoned back she began trembling so hard she couldn’t concentrate on reading, and she had to leave the room.

When I first phoned and explained Anon’s symptoms, the receptionist told me I wouldn’t be able to speak with a Doctor (ie. get a phone call appointment) until a week from today. So next Wednesday, Unless Anon was suicidal and in danger of killing herself. What the hell?!

I calmly explained that Anon is hallucinating throughout the day, every day. She has extreme paranoia and can’t tell what is and isn’t real. I said if I wasn’t watching her, she would harm herself greatly.

When asked again if she was suicidal and in danger I said no, because I am here, but if she was alone she would most certainly badly injure herself, if not succeed in killing herself.

The receptionist said Anon’s new GP would phone us back this evening, and decide for himself if he wanted to see us next week.

The Doctor phoned and I explained that we are at crisis point. I explained that Anon is experiencing psychotic symptoms outside of a mood episode, she is struggling greatly and, truth be told, so am I.

We talked a bit about the ‘new’ symptoms (feeling she is not in control of her actions / speech, that the world isn’t ‘real’, that people are spying on her etc) and the Doctor was fantastic. He came across as being genuinely concerned about Anon / us, and really seemed to want to help.

He booked us in for an appointment tomorrow (bit sooner than next week!), and asked if I would be able to make sure I was with Anon 24/7 and make sure she is safe. I told him that’s what I do every day, and was relieved he understood the gravity of the situation 🙂

The Doctor reminded me I could phone 111 if we couldn’t last until tomorrow, and he said it would be a good idea for me to be there at the appointment (I don’t think we’d get Anon through the door without me…). He had no trouble with me saying that I might have to do a significant bit of the talking, as Anon is not in a good place, and he was fine with me mentioning a few things Anon won’t be comfortable talking about.

I really hope this appointment goes well…

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It’s so hard to get the ill person help…

It’s Anon’s partner and full-time carer here. Just come to have a moan – if we can’t whinge on our blog about Bipolar, where can we?

Things have been hideously hard for quite a number of years now, but it seems to have worsened drastically this past what, four, five months?

Anon is unrecognisable…constant fear and panic, hallucinations…just a total blankness, numbness and desperation. A terror. Last night she sat on the couch for hours, not talking or moving or being, with tears trickling down her face.

I’m pushing so hard against her to convince her to let me get us help, but I’m also having to battle equally hard against the wonderful NHS.

I got in touch with our GP practice and, as the GP that we so trusted and respected has apparently left, I spoke with the receptionist about getting Anon a new GP, and asked if there were any that specialised in mental health.

The receptionist was surprisingly helpful (they usually suck) and recommended a Doctor who sounded good. I spoke with Anon and persuaded her to give him a try, but we had to wait until this week when he was back from paternity leave.

We were supposed to get a phone appointment at 5.30pm from the Doctor, but at 6.10pm it still hadn’t come and we were both anxious and stressed and we also really needed to walk our dogs.

We headed out and at 6.20pm, when we were on a narrow country lane with absolutely no lighting and where cars drive way too fast, we got a phone call from the Doctor and missed the call. We rushed to a footpath off the road and phoned back less than ten minutes after the call, but the surgery was shut so nobody picked up.

The Doctor left an answerphone message which stressed Anon out, as even though I clearly told the receptionist why I was ringing and that the Doctor should talk to me, and not Anon, the Doctor started the message by saying “Hello [Anon]”, and went on to talk about how Anon needed a medication review and talked about something to do with her prescription…THAT’S NOT WHY WE MADE THIS APPOINTMENT!!

And as Anon has such trouble trusting Doctors after years of being treated like shit, she now doesn’t want to see him…

This weekend has been absolute hell and I am amazed we have got through it without a suicide attempt. Bless Anon she has been fighting so hard and when out walking, if we bump into someone we know or she’s training our dogs she has put on such a convincing mask.

Tonight I will probably end up calling NHS 111, but I don’t see how they can help.

Our issue at the moment is the one professional who treated us well has left, and Anon finds meeting new Doctors terrifying. Likewise we have no help from a Social Worker as she blew it with Anon, and Anon now doesn’t want to get help from the same establishment due to her paranoia.

Crisis Team have always made the situation worse and going to A&E would be incredibly stressful and difficult for us all, and in the past when we have gone to hospital we have been sent away with ‘keep doing what you’re doing, watch her 24/7 and go see your GP when you can.’

Nobody helps.

Professionals never seem to take Anon seriously, and I don’t know why. Is it because she almost always turns up for appointments, and she tries her best to answer the Doctors’ questions? Is it because she’s not crying hysterically, or screaming and shouting? Because she’s in just as much pain, just as much danger, as if she was.

Where else can I go for help? We can’t live like this. I have never seen Anon in such a crisis and I can’t help.

Most the medications we’d be willing to try for Anon I think we would really have to fight for, as the medications she wants to try either aren’t used in the UK or aren’t used for Bipolar…but the ones we have been offered (Seroquel / Quetiapine, Lamotrigine / Lamictal, Depakote, Zyprexa / Olanzipine, Lithium) we have either tried or all have side effects that would scare me, never mind Anon!

This is a huge rant, but I need to get it out somehow.