Author Topic: Direct payments and transport  (Read 839 times)

Fiz

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Direct payments and transport
« on: December 21, 2017, 02:05:34 PM »
I'm probably without a hope in hell but I've decided to attempt to claim direct payments to cover the lump sum initial payment for a car leasing agreement and the monthly ongoing payment for the car lease. I'm completely housebound now due to back pain. A walk into town (a mile?) leaves me in excruciating pain requiring 3 maximum doses of oramorph through that day on top of the two buprenorphene patches I always wear plus two days on bed rest to get the pain under control.

I'm stuck in my house and can't

Go to a shop
Visit any social event such as meeting a friend for a cuppa
Go to church
Visit my GP
Access the psychological therapy offered me at the CMHT building
Visit family none of whom live nearby
Let my dog out (of a car) for some exercise
Visit any place of interest or event near me

All of which is severely impacting my mental health and is leaving me feeling hopeless about my future and the possibility of any quality of life. I'm unable to travel on buses due to the way they swing around corners, causing extreme spinal pain. In addition I'm unable to carry or lift luggage or shopping.

Making this application seems the only way in my mind that I can ever leave my house or have any kind of life. But I also realise that those things are not the current government's remit.

I will let you know how my application goes. Which I suspect is nowhere.

Fiz

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Re: Direct payments and transport
« Reply #1 on: December 21, 2017, 03:01:09 PM »
Very quick reply from the council saying they don't provide funds for vehicles and sending me a link to what help with transport is available which are either a motability vehicle or tax exemption both requiring enhanced mobility PIP so I remain stuck at home. I knew it was pointless asking.

SunshineMeadows (on Sabbactical)

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Re: Direct payments and transport
« Reply #2 on: December 21, 2017, 06:51:39 PM »
 >bighugs< sometimes asking and getting a negative response can help a person decide what to do next.

When I asked for help from a occupation therapist who visited when Mr Sunshine broke his ankle earlier this year she made it clear that I was expected to use my DLA payments to get the work done or buy the item I needed. I decided not to say I can't use that money because it pays for the car and towards the mortgage.

Over time we changed the kitchen work top and unit configuration ourselves. It was like we knew we had to do make the best of the resources we have.

What is the wheelchair service like where you live? Maybe you could get a wheelchair your friends or a church volunteer could push. Aggggggghhhhr I know how that sounds because I am not good at relying on other peoples's charity.

Sorry I am rambling a bit it is probably the Pregablin although have I rambled like this before?



Fiz

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Re: Direct payments and transport
« Reply #3 on: December 21, 2017, 06:56:39 PM »
That's definitely not rambling  >hugs<  >biggergrin<

I rarely ever go out with someone and the friend who sometimes picks up medication for me has severe asthma and gets breathless walking so she'd never manage to push a wheelchair.

I think I need to come to terms with the fact that I'm housebound. Wanting to venture further and not being able to is just going to leave me frustrated and stressed.

ally

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Re: Direct payments and transport
« Reply #4 on: December 21, 2017, 08:36:09 PM »
Fizz. lankou has posted the below in a different section of the forum.  To gain 12 points needed for the enhanced mobility on pip, ideally you  need to score on the planning and following a journey, as well as the moving Around component.  If I were you, and didn't  score enough points for the enhanced rate, and, if I fitted into the criteria for the award below , I'd wait and see how it enfolds.  There's nothing to stop you putting in another claim at a later date.  The below is about planning and following a journey for those with MH issues.

The High Court has found that part of the rules governing Personal Independence Payments are unlawfully discriminatory against people with mental health impairments. The Public Law Project’s client, RF, won on all three grounds of her challenge (RF v Secretary of State for Work and Pensions). The judge quashed the 2017 Personal Independence Payment (PIP) Regulations because they discriminate against those with disabilities in breach of Human Rights Act 1998 obligations. Because they were discriminatory, the judge also found that the Secretary of State did not have lawful power to make the Regulations (i.e. they were “ultra vires”), and that he should have consulted before making them, because they went against the very purpose of what PIP regime sought to achieve.

The judge heard that the Regulations were laid by negative resolution in February 2017, received relatively little parliamentary attention, and were rushed through the parliamentary process by the Secretary of State without prior reference to checks by relevant committees.  Contrary to the Secretary of State’s defence, the judge found that the decision to introduce the Regulations was ‘manifestly without reasonable foundation’ and commented that the wish to save money could not justify such an unreasonable measure.

During the course of the trial, the Secretary of State accepted that the testing carried out for PIP had not looked at whether the basis for treating those with psychological distress differently was sound or not, and the testing actually done was limited. 

The Government intends to appeal the decision. The Regulations will not be quashed until the Court of Appeal decides whether or not the appeal should proceed. RF is anticipating a decision on this in early 2018.

 

Fiz

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Re: Direct payments and transport
« Reply #5 on: December 22, 2017, 04:12:09 PM »
So does this mean the criteria for PIP mobility might change if this ruling is upheld? It is virtually impossible to score any significant points for mobility due to mental health problems. But it's my physical pain that is causing me to be housebound rather than my mental health,  but being housebound has worsened my mental health problems considerably. Stuck between a rock and a hard place I feel.

I contacted the care coordinator this morning and said a main worry about going forward for psychological therapy is that often I will be in too much pain to get there so I will miss many sessions. Her answer was that I'm putting up barriers to accessing therapy and it's up to me to remove them. Oh I will just forget about how excruciating every step is then! As if I've created the barrier, it just made me so cross. As if I don't feel bad enough about myself as it is.

ally

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Re: Direct payments and transport
« Reply #6 on: December 22, 2017, 05:46:36 PM »
Yes, the mobility criteria could change depending on the outcome of what happens.  It may be worth waiting to see how things pan out.   Wait and see if the ruling is upheld in early 2018.  You've got a better chance, if you can score on both the moving around , and the planning and following a journey components.

lankou

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Re: Direct payments and transport
« Reply #7 on: December 22, 2017, 06:11:29 PM »
Here is a link to the actual judgement.

http://www.bailii.org/ew/cases/EWHC/Admin/2017/3375.html

Monic1511

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Re: Direct payments and transport
« Reply #8 on: December 22, 2017, 07:49:53 PM »
Fiz
I think you need to consider the mobility question from this point :  The majority of the time can you repeatedly, reliably and safely mobilise 20 steps without severe pain or causing a deterioration in your overall health.   If the answer is no then look at how you can evidence that, then you take the steps involved in claiming PIP rather than DLA. >hugs<

KizzyKazaer

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Re: Direct payments and transport
« Reply #9 on: December 22, 2017, 09:32:36 PM »
Quote
I contacted the care coordinator this morning and said a main worry about going forward for psychological therapy is that often I will be in too much pain to get there so I will miss many sessions. Her answer was that I'm putting up barriers to accessing therapy and it's up to me to remove them.

FFS, that sort of attitude just makes me wonder how far some mental health services have actually moved into the new millennium.  I remember from the dark days of the 1980s - when 'behaviour modification' was much in vogue - how these 'professionals' who were supposed to help could actually make me feel even more shittier about myself than I already did.  Has nothing been learnt??  (as you may deduce, I am rather angry after reading the above.  I would like to slap your care co-ordinator for such gross insensitivity and stupidity  >doh<  >steam<)

So, no practical support like offering some financial help with a taxi to and from the appointments then?  That would make far more sense, and be a properly respectful and humane approach, rather than this nonsense that heaps it all back on you (as if you didn't need more blaming and guilt-tripping, that's the very last thing a PTSD survivor needs; I know it...)


Fiz

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Re: Direct payments and transport
« Reply #10 on: December 22, 2017, 10:42:30 PM »
Totally agree Kizzy. Whether or not I do have psychological therapy, this has made me realise, what I knew already really, is that there is no way I can work with this care coordinator. She's detrimental to my mental health.

The spinal consultant told me about the 3 drugs regularly used for spinal nerve pain. He said Amitriptyline has the best results and least side effects and can reduce nerve pain by 30-40%. I thought initially that I'd never be prescribed a tricyclic drug given my history of overdoses but initially when I spoke to my GP on the phone from hospital having been taken by MH staff to my spinal appointment she said she wouldn't necessarily discount it though she'd keep firm tabs on how many tablets I had at any time. However she spoke to the hospital consultant during this last week and now says she won't prescribe it for me. She gave me the option of the other two drugs but a significant percentage of people on both drugs experience significant clinical weight gain with a further percentage experiencing weight gain that isn't 'clinically significant'. I realise some people don't gain weight on these drugs but both drugs are sedative in nature and although that naturally helps with anxiety, anxiety isn't an issue for me unless triggered PTSD wise where no medication would help, fatigue and lack of energy is a major problem for me so I don't want drugs that will sedate me or make me feel more fatigued. So I've made the decision to bypass my GP and have ordered Amitriptyline online from a British pharmacy using a private prescription service and the tablets will arrive tomorrow. I shall start with 10mg each night which is enough for many people to feel relief from nerve pain, some people need to increase to 20mg. Both doses are a fraction of the doses given to people using the drug as an antidepressant.

The spinal consultant implied I could reduce the strength of buprenorphene patches I am on if Amitriptyline does its job but that will be difficult to negotiate with my GP given my Amitriptyline is being bought privately from a British pharmacy. So I await to see how helpful Amitriptyline is, I hope I will be able to be more active and perhaps leave the house and get to a shop or whatever.

I do believe the spinal consultant knows what he's talking about so I'm hopeful the Amitriptyline will help, I just hope I can reliably afford to buy the drug so that any benefit can be maintained.

Gah to rubbish care coordinators! 

KizzyKazaer

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Re: Direct payments and transport
« Reply #11 on: December 23, 2017, 10:36:01 AM »
Not great that you have to resort to ordering the most helpful medication over the Internet - what's your GP's problem with it?  (can fully understand why you'd want to avoid anything with weight gain and sedation as common side effects!)

ally

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Re: Direct payments and transport
« Reply #12 on: December 23, 2017, 11:10:15 AM »
Have you tried amitryptyline before?  I suggest you look on line at the numerous posts on the drug.  I've been on it for years.  Even the 10 mg can cause sedation and weight gain,  it can effect certain peoples metabolism.  Although I'm on a  higher doseage than 10 mg, I can only take it at 5 pm.  Any later, and, I'd be zonked out all day.  It took me a while before I could even cope with 10 mg as its so sedating.  Many others have the exact same problem with the med.  if you do go on it, and decide to increase the doseage, it's not easy to come off it due to the unwanted side effects.  That's probably why your GP has decided not to prescribe it.  What other meds were suggested? 

Fiz

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Re: Direct payments and transport
« Reply #13 on: December 23, 2017, 04:22:58 PM »
It's Amitriptyline that I've bought. The spinal consultant recommended it being better than gabapentin and the newer pregabalin saying Amitriptityline works best for nerve pain and you require lower doses of it for efficacy. My GP wouldn't prescribe it as it is a tricyclic drug dangerous in overdose and I've taken several overdoses before however the dose for nerve pain is either 10mg or 20mg daily and she hands out all my medication weekly or fortnightly at most to reduce risk so the dosage I'd be given is really low and those amounts not dangerous. I can only hope if my GP sees I'm on it and it's working well that she will start prescribing it as I'm on it anyway. I've bought eighty four 10mg tablets so have in my possession far more Amitriptityline than I would if I was to receive a weekly or fortnightly prescription.

I do have a store of dothiepin/dosulepin which is my emotional safety net and gives me the ability to face one day at a time. Something some of you will understand. So I have hoarded a prescribed tricyclic drug in the past, I did this by putting my monthly script into the doctors every 3 weeks for 15 years gaining an excess while taking the proper dose. I wouldn't be able to do that with the Amitriptyline because my GP only hands out exactly the right dose for the week or fortnight until I speak to her next.

When I was on dothiepin and originally Amitriptyline for depression my dose on both was 225mg which is the maximum dose so I've been on it before for depression. I'm therefore not expecting the 10mg to affect my weight, here's hoping anyway. I was not much heavier than I am currently when I was taking 225mg for all those years. I took lithium for a year and gained 3 stone so they took me off it. I never lost that 3 stone but stopped gaining once off that drug.

Psych drugs are the pits but I badly want to be able to get out of the house and go places and be able to walk so if I have to buy Amitriptyline to get it then I will.

Fiz

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Re: Direct payments and transport
« Reply #14 on: December 23, 2017, 05:14:41 PM »
Fiz
I think you need to consider the mobility question from this point :  The majority of the time can you repeatedly, reliably and safely mobilise 20 steps without severe pain or causing a deterioration in your overall health.   If the answer is no then look at how you can evidence that, then you take the steps involved in claiming PIP rather than DLA. >hugs<

Monic, I've only just spotted your post I don't know why I missed it before. Clicking on "new" normally takes me to the first unread post.

It's about 20 steps when the pain kicks in, I literally get to the house next door but one before I'm in pain. From that point on I'm coping with pain as I walk. The longer the distance I walk, or the time I'm standing, the longer the recovery time is. I can be in pain for hours or days depending on the distance I walked. I'm currently receiving PIP enhanced care for my mental health needs and nothing for mobility. I'm not sure if being in pain from the 20 steps point is enough to change my PIP award? Given that at times I walk further than that distance.

For example yesterday my daughter collected me to take me to watch her and her goddaughter ice skate. My blue badge enable us to park right by the rink, we ate at a restaurant adjacent to it then I sat and watched them skate. I stupidly didn't take my oramorph with me as I needed it and the spinal nerve pain came in awful spasms. I took oramorph once she dropped me home and I'm still in constant pain with additional nerve spasms because of yesterday's walking. That's an example. That's the first time I have left the house since hospital discharge because I can't walk to places anymore. What happens if I do is I get to a point when I'm in agony and I'm unable to walk home. So I can't afford the risk of being stranded and standing is as painful as walking.