urgent advice needed (pip denied for my daughter)

General health and lifestyle
1

hello, i could really do with some advice as the cab along with others havent been as helpful as id have hoped, a few months back my daughter reported a change in circumstances in regards to her mental health conditions long story short the medication she was on when she initially claimed ended up having adverse reactions making her even worse so medications were changed and we were advised to report the changes assuming we would be entitled to more help, originally she was awarded standard care dla for 10 years. she suffers with borderline personality disorder, agoraphobia with panic disorder and manic depression she is unable to leave the house without myself as she does not understand the context of what people are saying making her sadly a threat to herself and others, she struggles daily with trying to control her thoughts and moods, a very long history of self harm and suicide attempts and she dosent eat so without me preparing meals she would not eat she require my supervision 24/7. on the 14th of december she recieved a letter saying she was no longer entitled to pip and the money has been stopped she scored 4 on the whole assesment, unfortunatly she found the letter before i did and ended up in hospital later on that night from an overdose she left a letter telling me that without the help of pip she couldnt survive so had no option. i really would like advice on if i should try to get a reconsideration for her, it is asking the impossible for her to leave her bedroom so finding work is out of the question. are reconsiderations succesful in many cases? we currently have no financial help and really need help in regards to what we do now. 

many thanks, Tracy

2

Track first off all am so so sorry about your circumstances if you don't find that c a b are not very helpful may I suggest getting in contact with your local welfare rights officer your daughter clearly needs her pip and a reconsideration as this is appaling it's only a suggestion but I would certainly contact them hope this helps and you get it as she's definitely intitled to it

3

hey henry thank you so much for your kind words and advice, ive not heard of a welfare officer i shall deffinatly look into that anything is worth a shot right now 

4

Go to your local council offices they should have a department in there which deal with cases like your daughters good luck sweetheart

5

Local welfare rights officer is an excellent idea.

When they took my DLa away from me and I appealed I was represented by a local welfare rights officer and got it back.

Hope this helps.

Keep in touch

Sarah

6

Hi Tracy sorry to hear that they are not human and don't care at all ,the best ppl who can help it's the welfare from you council, or if there's a psychiatrist hospital. And you daughter is known to them then they can help her . If you don't mind me asking .what medications your daughter is talking ?? And the dosage ,please 

7

Hi Tracy,

I am very sorry what happened to your daughter, it is happening all over the UK. There is many shocking stories around at the moment, and even books published on the mess of this country.

You should never use CAB, they are partially funded by the Government - which is why not many people use them. You're more than likely to end up with a biased opinion. A person that knows your daughter well would give a better background than CAB, who you've only just met (some CAB filled in PIP Application are not even looked at, because DWP are unable to read the contents).

Making a change in DLA at the moment is an automatic switch to PIP, done by the DWP. The problem is when you inform them, they should have sent you a form to fill in, I cannot remember the number of the sheet.

I had the same problem, my condition became worse, but this was last year. The DWP only want you to fill in the form partially, this is the downfall or 'trap' as most people call it.

My wife filled in mine, but she ignored the guidelines and filled in the entire lot, so they knew how everything had changed. On top of that, she noted down all medication and for which disorders they had been prescribed for. She even attached many A4 sheets of paper with a full breakdown of consultants, medications, etc - but we did this in June last year. In August the DWP were still checking my records were correct, and I should here from them soon.

It took until December that year, to come to a final decision, which was an increase from DLA Middle Rate Care to DLA High Rate Care.

How you fill the form in is a big issue, CAB does not know Health or Disorders, they can only look them up, whether they have access to the Government Health A-Z of Illnesses I do not know, but that is only an 800 page manual and it is very lax on information, when cross-referenced with the BMJ (British Medical Journal), which is huge, and you need a subscriiption to view illnesses or disorders in full.

Henry, Sarah and Nadnad are people with a good idea which would go better in your favor.

Regards,

Les.

8

With respect, nobody is entitled to PIP. They may well be entitled to make a claim, but there is no entitlement until she can prove that she scores enough points in the various descriptor boxes. Only the DWP or a Tribunal can authorise 'an entitlement'.

 

9

Absolutely!! There are three main reasons why PIP decisions are what they are. (1) a poorly completed PIP2 form, (2) the failure of the claimant give a good and clear explantion of the difficulties that they experience because of the disabilities, and (3) the failure to ensure that the DWP collect the appropriate evidence from the best source.

As you can see, failure in a claim is mainly down to the claimants themselves.

I would also add that CAB are no longer able to offer good support simply because they no longer have the funding to employ professional welfare rights people and many councils, in the main no longer employ Welfare Rights Officers for the general public because they were the first to go due to cuts in the grants made to the Councils. They still generally have one or two employed, but these are restricted for those who are clients of Social Services.

10

I should have added - (2).....good and clear explantion to the assessor of the difficulties.....

11

That is perfectly true Les. It is better to send in a complete and highly detailed application, that they can see a lot of time and effort has gone in to the Application. And, any additional A4 sheets you supply you must make sure they have your National Insurance number on, as well as your name and address.

Even these websites that get a very high pass rate, it is all down to the initial PIP Form, but they charge you for this information, because so many people are not able to complete these forms correctly or rush them, but by doing so, they make themselves look bad, even before the assessment.

You have a few weeks, my wife spent over four days filling mine in just for a rate to be put up. The letter we received back from the DWP was not something you see very often, they guy that went through my case stated I should of applied many years ago for the DLA High Care Rate, he even said I cannot authorise a back payment before the application date for the increase. I got about £400 roughly, it came in handy to be honest just before Xmas last year - we did not spend it on presents, we needed a new cooker. These days they must be connected and delivered by authorised guys, government regulations for house insurance purposes.

I might ask Alan if I can send him a link to add to the pinned post - of the A- Z Adult Medical Conditions, I would need to check first. I have looked all over the gov website and cannot find any backlinks to it, so whether it is meant to be an internal document only, I don't know - if thats the case, then it is no wonder documents are 'leaked' on to the web - I only know of this one, which I found by mistake.

Regards,

Les.

12

If registered disabled with the council and social services then they will get help from the welfare rights officers and here the welfare ppl work full time , there's a lot of association and specialty with the mentally ill ppl ,and depressed, waiting time is 6 weeks and just around where I live there's  maya for ladies and manor garden ,Cdat it's a walking clinic for disabled and personality disorder services,and another one  in psychiatric hospital and walk in clinic at the welfare at any Gp in here . If there's cut not we are not  hit by it yet in islington and Camden .but they did cut one thing in here the Christmas lights 

13

The days of a local authority keeping a register of all of the disabled people in their borough are long gone.

In my area (Kent County Council) there are just two full time Welfare Rights Officers now. You are only allowed to have them help you if you are already under the care of Social Services.

As you can imagine, the bar that is now imposed on those eligible for help from Social Services is extremely high - you have to be at a very severe level of needing care.

You do have the right to have a Social Services Assessment, but if the result of that assessment shows anything but 'severe' you get no assistance. This was used as a 'backdoor' to get help from the Welfare Rights Officers, but far too many abused it so it was stopped.

The Mental Health day units in Kent were all closed. We now have just one secure unit covering the whole of the county.

I have been both an in patient and out patient with the Mental Health Service in Kent since 1995. Because I refused to fully engage back in 2003 and preferred alcohol instead, I am no longer able to access any of what I had in the past. Now I just try to cope with what the GP can offer.

 Maybe the reason as to why and how the London Boroughs can afford these centres is because all of their children's services have been taken over by Kent County Council. Margate with it's multitude of empty hotels is now used to house the majority of London's difficult children. In addition Kent C.C. is totally responsible for any immigrant that lands in the county. That is their health, housing, social care, education up to age 25, etc. 

14

Hi Tracy and Les,

I can phone my local Adult Social Care, and ask for a review at anytime - they take my details and phone me back normally the same day, or a day later. They have all my details on their computers.

I have my own dedicated Occuptional Therapist and District Nurse, if I need them at anytime.

I do not have assessments from Social Services, if I require anything then Adult Social Care normally deals with it, or my doctor deals with it by passing my details on to the District Nurses. I am fully registered with them, because of equipment that I use for my disabilities.

Most of the time my Team lLeader Neurology Consultant, asks for reviews if anything as changed during a 6 month period. Today, the hospital phoned me to make two appointments for January and February 2016 - January for 6 BoTox Injections by one of the Neurologist Team, then in February I have a 20 minute slot with the Bristish President of Neurology Dr G Fuller, whom everyone respects, he deals with NHS and Private patients as well as Research Seminars and Conferences in London.

The only problem I encounter is with Electronic Prescriptions, I can usually order online all my medication in advance, by 2 months. This is then sent electronically to the local pharmacy - this is okay, until I put in a repeat for Class "A" medication. These do not get sent to the Pharmacy and prescribed - The Pharmacy does get the prescription but a paper version only, which needs signatures in two places due to the type of medication being Class "A".

Where I am situated is strange because we come under two councils, I have to phone Adult Care Sevices in Town A, to get through to Town B which is 7 miles away. We live in a village, yet it is split in boundaries under 3 towns. There is a road in the nearest town to us, all the odd numbers come under one council, while the even numbers come under another council. It was done during boundary changes to keep Tory's in power.

They have done cuts around here, but they try as much as possible to keep them to a minimum - we are always kept informed by councils because we have IMJIN / NATO just up the road.

You may find the Red Cross could help you in some way, they do a lot of work around here.

Regards,

Les

15

Then you must be very thankful that you do not live within Kent!!

Here Social Services just close your file down after they have reviewed the assessment and have offered what equipment they can. 

I gave up with SS as you have to go through the syatem everytime you contact them.

As for being kept in the loop, I am supposed to be under the Community Mental Health Team for the Older Person. Had all of the tests for Dementia (diagnosed over 3 years ago as early onset) failed miserably with frontal lobe damage (trauma) and haven't heard a damn thing from them since! Mind you when we did have a dedicated Mental Health Day Service up until 2005 I was a long term patient and received regular appointments. That closed down and i suppose everybody had to sort their own problems out - well I had to.

It is a clear policy in Kent that if you are not classed as being in the most severe/vulnerable category you now get no help. Been and tried it - I'm not ill enough.

So in a nutshell, it seems that down here you are ignored until something drastic has to happen. 

16

Hi Les,

This may seem a stupid question, but is your property "flagged" for having a disabled person living in it?

I have a Personal Care Plan - which my doctor put me on. It is a 4 page document, that we have copies of which my wife gives to the Paramedics, it contains all my details they would normally write down, it lists all prescribed medications, medications provided in hospital every 10 weeks, which Neurologists I see - and it breaks down over a yearly period. All seizures I have whether they are Epileptic or Functional Episodes (28 variations), which is my core underlying problem which is Dystonia. I know back last year they started rolling them out, they are updated at the hospital and my doctors surgery. It's basically an easier way for any person in the Health Authority to view my records, which in a paper A4 form covered over 3 volumes of data.

If your premises is "flagged" has disabled then your energy supplier calls you quite regular, to see how you are getting on and can they offer further help. On top of this, they send your details on to your energy distributor whom pay you compensation by the hour if the electric or gas is down in your area, they also notify you via phone.

On top of all that I am also on the "Telecare" Emergency System, which comes with the red button wrist bracelet and fire alarm, they also run tests on the phone line (this can be annoying if you are talking to someone) and the Emergency Line Box cuts in asking you to replace the handset while an Emergency Line Check is done.

I'm nowhere near Kent, opposite side the south west, but closer to Wales. To a degree I am housebound - I cannot travel more than 20 miles in any direction from our bungalow, I rely on electrical equipment in the premises. I did not used to be like this, it just become worse over the years. I nearly died twice from my intestines going gangrene, each operation takes over 10 months to recover, but I have never been right since - and thats not even my core disorder. So you can probably imagine I have to attend hospitals virtually every month, either by an appointment or by ambulance. While my Consultants are still trying numerous medications, even now - last change was about 5 weeks ago.

How I would cope in Kent? I have no idea - that my friend is something I don't want to even think about....

Regards,

Les.

17

Thanks Les, that has given me a lot to think about. I have never heard anything of that nature. I can see how it would work, and to be honest it would be invaluable for me to have such a plan. I have a complication where all of the ateries in the chest and stomach (liver to spleen via the aorta are kinked and thrombotic. In consequence the veins that run through the stomach wall have swollen to become the new arteries (obviously with a much thinner wall). When they bleed into the stomach I have to be conscious to tell them that it isn't an ulcer but collaterals which if not treated within minutes I die. When admitted into A&E if they decide to  give me IV Morphine (Chronic Pancreatitis) I have to be conscious to tell them that I am already up to at least a100mg level in my body.

Yes it could well be a lifesaver.

Energy supplier - never heard of it.

Telecare ???

Where on earth do you get all of that info from? Nobody has mentioned anything to me. I am in a pretty bad way most of the time and have to look after my wife who is in a worse position!

To be totally honest I have no faith in any system that involves Social Services or the DWP and therefore avoid them like the plague if I can.

Neither have been helpful to me, As I have said, I refuse to involve SS in anything as it is always a 'new case' and have to go through the system which then ends up with a case manager being appointed who then decides that there are cases out there worse than me so the file gets closed down. 

As for GP involvement well that is another subject, I can't say that over the past 5 years at least I have seen the same locum more than once! Of the 10min limit given it takes 5min for me to go through the history then tell them what the current problem is. This generally ends up with either a blood test or some pills and told to go away. Christ, I know whats wrong with me and how it should be treated - but they say they know best! 

The best was last year when a locum diagnosed my wife as having a bit of a virus, telling her to go home, keep warm and rest. She ended up the following night unable to breathe, rang 999 and she was admitted with a PE and fluid around her right lung!!

Still enough, think yourself lucky to be in the Avon area and not in Kent.

18

Dear Tracy,

sorry to hear how bad your daughter is being treated. This really makes my blood boil the way in which they treat the sick and disabled, they think there is nothing wrong with us and should all be working. I also suffer with BPD and have had to go for private therapy because I couldn't get help on the NHS, I have had to pay out of the little bit of savings I had now that's all gone but I will have to find the money some how as I need the help. I wish your daughter all the best and do hope she gets the help she needs.

19

As I keep on saying, the DWP are not interested in what is wrong. They are only concerned if someone can prove that they fit one or more of the PIP descriptors that make up PIP.

As an example and on my mental health problems only, I suffer from PTSD, Depression, Anxiety (both linked directly to PTSD), early onset Dementia and a complete personality change/lost motor skills/inability to recognise shapes etc, brought about through frontal lobe damage (the brain was shunted forwards following severe trauma to the back of the head.  I have received Middle Care DLA since 1996 for this aspect alone. Looking at PIP, I cannot for the life of me and neither can my wife or daughters' find any box/descriptor that fits me. Hence why I am resigned to get no PIP award. 

PIP is simply a cash saving exercise and has absolutely nothing to do with making sure that more disabled people are brought into the disability benefit system that DLA excluded. The opposite is true - they are trying to cut the DLA budget by 20%!!

20

This PIP form seems to have been designed in a way to stop people from getting the money they deserve. I don't know if you have tried contacting an advocate who is experienced  in dealing with people who have physical and mental disabilities, as they may be able to help you. If you want to find an advocate maybe try contacting Rethink/Mind these charities deal with mental health issues and might be able to help or if they can't help may know  the right people to put you in touch with. Another idea is to contact welfare rights. Hope you find the help you need.

Kindest regards.