PIP confusion, advice needed please

Gypsywoman

I am so very sorry to hear the way things are going for you itsme. I know the stress of it all will make your pain much worse.

I know it is hard when all the odds are stacked against you and the pain and anxiety and stress are your constant companions, but please reach out for support, to friends or professionals.

Have your GP visit and tell him how you are feeling and how you felt you did not want to go on. He should refer you, if you are not already under the MH services. you should then be given the support of a CPN, they can be invaluable in not only helping you cope, but also in helping with claims and appeals and accompanying you to them. My PIP PA4 form (assessment) that a nurse carried out did have a very obvious lie in and my CPN noted this.

Your bathroom sounds a total nightmare and not acceptable and I am sure something could be done, due to the falls you have had. The duty of care rests with the Social Services and a care assessment can be requested from your local Adult Social Services. Although my bathroom is bigger I could not get into the bath to access the shower.and so had a care assessment and then was given a shower room. I also have severe arthritis and although I live in a HA bungalow it was the local council who paid.

I use a rollator when out, so I can sit when needed (back spasms) and gives me security whe walking. I also have a little shopping box under the seat that I can carry my shopping in. I also hook a bag on the handles. I often go to the local supermarket and have to ask people what something says on my shopping list. I am often asked who wrote it and I have to admit it is my writing. Due to arthritis I cannot write longhand any more, so I do so understand how frustrating that can be. I use to be such a neat writer.

Know you are not alone, although I know it feels so right now. You need to pull in the resource of people and the best way is to have one key person who knows who you need and want contact with for different challenges you have.

I will be thinking of you and watching your thread. I am lucky that I can still at times get out now. Perhaps with the right support and transport that you can access, that day will come for you also.

Please do not end your life. Look for the pleasure in little things like a nice cup of tea or coffee (You can get specially designed water heaters, I have one. No lifting involved) a good book or a good article in the paper, good memories, your friend abroad, a movie, The future can be so very different, it really can and whatever gets you through until then, focus on.

I tried to end my life some years ago and I am so pleased I was found in time or I would not have known that the sun can shine again. That I could build up my life again. That through putting my name on every HA list I would get this lovely little bungalow that makes my life so much easier and yes, i find pleasure in all the little things. Please try to make that your goal to change that what can be changed, to suit you. You deserve it - never doubt that.

Take care x

pollyanna_26

Gypsywoman I just wanted to say yours is a lovely and heartfelt post I hope it will bring some hope and comfort to the op and others who may come across this thread .
You've probably exhausted yourself now so I wish you some rest and hopefully some relief from the pain x
Itsme Hope you feel a little calmer and can take some comfort from the lovely words above .
Reach out for that help , don't feel too proud , stubborn , afraid or any of the many emotions these situations can provoke .
You mentioned part of the damage was down to marital abuse . That means you are a survivor and this fellow survivor believes if you got through that and are still here you will get through this challenge .
If you haven't done so yet begin tomorrow with the calls to find that support .
You aren't alone , virtual support can't replace the outside support you need but we will stand alongside you if you so wish .
Take care
polly x

Spindrift24

Hi,
I'm a former Equality Adviser to local authorities and whoever is dealing with your case is not doing their job properly! You should have had a formal assessment by an Occupational Therapist and from what you've said you may be eligible for a Disabled Facilities Grant - though those are means tested.

If they refuse to do that write to the Chief Exec and copy the letter to your ward Councillor and MP. Doesn't matter if you didn't vote for them, they will help. It may also be possible to get an assessment done by asking your GP. A history of falls should set alarm bells ringing as they'll want to keep you out of hospital.

If you don't have any family or friends to help with this or PIP, then do try and find a support group. I really do hope you succeed with your PIP appeal. I'm awaiting my first re-assessment and it is scary. I can't understand how you can possibly score zero on the mobility section for starters.

Two final thoughts: have you thought of getting Meals on Wheels, some services at least used to do a less than 7 days a week service, and there might be a local befriending service that does home visits.

Good luck!

itsmeinnit123

Update

Even more confused

Still awaiting the mandatory thing to be decided upon

My old DLA was £88 every 4 weeks...low care only

Last payment was 1 month ago when I was told it would stop pending madatory thingy

I look in the account just now and DLA....yes DLA...have deposited £66 - effectively 3 weeks worth of low care payment

Seems they might be as confused as I am??

No letters received, not a phone call..nada...

pmlindyloo

itsmeinnit123 wrote: »

Update

Even more confused

Still awaiting the mandatory thing to be decided upon

My old DLA was £88 every 4 weeks...low care only

Last payment was 1 month ago when I was told it would stop pending madatory thingy

I look in the account just now and DLA....yes DLA...have deposited £66 - effectively 3 weeks worth of low care payment

Seems they might be as confused as I am??

No letters received, not a phone call..nada...

£22 a week is also standard mobility for PIP so it is possible that your MR overturned the original decision and awarded you standard mobility. Sometimes the actual payment comes through before the decision letter.

You could telephone and ask if the decision was made on the MR and when the decision letter was posted.

If they have awarded you PIP standard mobility then you can still appeal this decision if you feel that it is incorrect.

w06

But also your DLA award doesn't stop on the date of the decision, it's ?4 weeks later, which is often out of synch with the payment dates and so there is usually an odd payment, less that 4 weeks, whether you receive PIP or the DLA claim is ended with no PIP.

itsmeinnit123

w06 wrote: »

But also your DLA award doesn't stop on the date of the decision, it's ?4 weeks later, which is often out of synch with the payment dates and so there is usually an odd payment, less that 4 weeks, whether you receive PIP or the DLA claim is ended with no PIP.

When I had a verbal argument with DLA and requested the mandatory thingy, it was the day before my DLA was due, I asked her specifically if I would get that payment, she said yes and that no further payments would be made until a decision made

So the 3 weeks worth has appeared today out of the blue.....its 4 weeks after the last payment and no communication from anyone

The bank details are marked as a deposit from DLA and not PIP

Not spending it incase they want it back.....

pmlindyloo

w06 wrote: »

But also your DLA award doesn't stop on the date of the decision, it's ?4 weeks later, which is often out of synch with the payment dates and so there is usually an odd payment, less that 4 weeks, whether you receive PIP or the DLA claim is ended with no PIP.

True and it could be this but usually the DLA continues on a weekly basis with an odd payment at the end.

According to OP the decision date was 29 April so they may have messed up the DLA payments and not carried on paying and then realised they should have.

Having said that, not many decisions are usually overturned at MR

OP, you need to telephone and find out if a decision has been made on your MR or if they were DLA payments.

Spindrift24

It's clear from your posts that you desperately need some practical help. If your GP can't or won't provide that then here are some suggestions.

If you have experienced domestic abuse of any kind, no matter how long ago, the your local rape crisis or Women's Aid or similar service may be able to help and refer on to other local organisations who can provide other forms of support. So will MIND or any disability group or the local council's Housing department - I really hope you are getting any help with Council Tax you're entitled to.

EDIT.
Original: If you're a tenant or Housing Assoc tenant then a nuclear option is to stop paying rent as that will get their attention!

N.B. Another poster has asked that I edit this comment to point out that just stopping paying rent could well backfire and cause more problems. I am happy to comply and clarify that this and subsequent posts do not refer to people in private rented accommodation, just Council and Housing Association tennants. But if you are struggling to afford the rent then you should tell your social landlord and if this is because of cuts to benefits or disability then you should let them know. In fact, if you are receiving Council Tax Benefit then this amounts to a change in you circumstances and you are obliged to inform them.

Could a neighbour help? Since I became disabled I have had to ask even strangers for help on occasion and people are almost always kind. Look at all the responses you've had here.

All you need is to find one person who will listen and go a little bit further than their job description requires. You have the advantage of being able to use the internet so a good starting point for finding local support groups is your Council for Volutary Services website. Don't give up, we're all thinking of you.

Alice_Holt

Spindrift24 wrote: »

If you're a tenant then a nuclear option is to stop paying rent as that will get their attention! .

Please don't do this.
Not to pay rent will only lead to greater problems, additional costs, and ultimately potential homelessness.
https://www.gov.uk/guidance/gaining-possession-of-a-privately-rented-property-let-on-an-assured-shorthold-tenancy

For the particular DLA / PIP problem you posted about - contact your local CAB / advice agency.