PIP, DLA and AA
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OCD & PIP

griff11griff11 Member Posts: 35 Connected
My daughter had assessment yesterday for PIP
I accompanied her.  No idea how it went and we all forgot to mention some issues.  
She’s takes medication and been having therapy, private and NHS fir over 5 years. Currently only private as her NHS counsellor wasn’t helping get, if anything she was making it worse.
Shes back working full time and her employer and colleagues supportive.  She resigned her previous job as her employer thought her MH an issue. 

She has contamination OCD.
Her issues are-
Dressing.  Washes hand after every item.  She won’t touch shoes so someone has to zip them up. 
She cleans office work station , including her chair when she arrives at work and before she leaves plus sometimes throughout day.  She cleans her mobile phone constantly.
She won’t use public toilets so forces herself to go every morning before showering (takes 30minutes most days and has to be told to finish as she’ll be late for work).  Shower is in specific order and takes 30 minutes though sometimes she gets out and goes back in.  
She forgets to take her meds.
She won’t touch food to cook
She won’t drink all day do she doesn’t need toilet.  
She takes pill back to back to avoid periods
She walks slowly as she’s terrified of stepping on something and constantly asks others to check her shoes.
She struggles with door handles and has to wash her hands 
Same with light switches 
She can’t touch her dusty laundry do I do all her laundry /cleaning etc.
She has to have fresh bath, hand and hair towel every shower. 
She makes us clean car seat belts & seat after she’s sat there 
She hasn’t been able to drive herself since before Xmas as she’s scared of making the inside of her car dirty 
She has panic attacks of varying severity daily , if after work she will go to bed.  If during the day she says she wants to die but she says she’s not suicidal.  Her panic attacks make her very angry but she disassociates during them.  

Not sure how any of this fits into PIP descriptors.  She’d like to move out but as she can’t do laundry or cooking she needs help .  She couldn’t clean house either as it would be too stressful so she would avoid and go to bed!  She often hits to bed at 6pm after work S ages too stressed to sit in living room in house 

Replies

  • poppy123456poppy123456 Community champion Posts: 18,542 Disability Gamechanger
    HI and welcome,

    Medication if needing prompting would be 1 point.
    She may score points for preparing food,
    Drinking will come under taking taking nutrition but if she can eat then she won't score points there.
    Housework, laundry, door handles, driving are not part of the PIP descriptors.
    Walking slowly to avoid stepping on something isn't part of the PIP descriptors.

    As she's had the PIP assessment then wait a week and she can ring DWP to request a copy of the assessment report to be sent to her. That will give her some idea what the decision is likely to be because they mostly go with the report.

    Have a look at this link and it will give you a better understanding of the PIP descriptors and what they mean.


    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • griff11griff11 Member Posts: 35 Connected
    @poppy123456 thanks for the reply.  It’s hard with MH disabilities as you can’t see the issues unless you are living with them.  It’s exhausting for everyone but particularly for her.  All our lives are ruled by her intrusive thoughts.

    PIP criteria is designed for physical disabilities and it feels like they play lip service to MH /LD disabilities though they are on as much need of support. 


  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @griff11   Pleased to meet you.

    Thank you for joining and sharing.

    I am one of the team of Community Champions like my friend @poppy123456 .

    I have mental health and disability, addiction history.

    I do advise, offer guidance on mental health issues to Community members having lots of experience and knowledge.

    I do understand the difficulties and problems surrounding OCD.

    I would like to suggest speaking to these mental health charities.

    I know you mentioned a lot of therapy .  Working with a support worker who can assist and be supportive could be beneficial.

    Used the three .

    https://www.richmondfellowship.org.uk.

    https://www.mind.org.uk.

    https://www.rethink.org.

    All offer floating support and give advice on benefits. Fill in forms, attend assessments.

    Well being and health.  Supported with anything else, employment or aspects of your daughters life can be helpful.

    Might not be in all areas.

    Hope that helps you.

    Please take care.

    @thespiceman


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • griff11griff11 Member Posts: 35 Connected
    @thespiceman thank you for the welcome.  Over the last 5/6 years we’ve not found any support groups locally to help.  Wales need more investment in this area.  
    While awaiting NHS referral and the once she had that age then had to wait a year for counselling.  She literally couldn’t wait as at the point we realised she was extremely unwell and would not leave her room at all we found a private counsellor.  She calmed her a bit but she needed OCD specialist.  We found one and she helped but then moved 80 miles away.  Eventually after 3 years NHS counsellor but not sure she fully understood how OCD worked as often she would just say to daughter , wash your hands then.  Not helpful when you spend 15 minutes washing your hands and they are dry and bleeding .  

    So we sought private help again.  This time looking did a therapist that didn’t only do CBT but integrative therapies.  He’s very good and has worked well on certain compulsions but not all.  Next step is a 5 day intensive course in England.  It’s very expensive but she can’t go on like this .  
  • poppy123456poppy123456 Community champion Posts: 18,542 Disability Gamechanger
    Lots of people claim PIP for mental health and how it affects them so I disagree the PIP criteria is for those with physical disabilities. My daughter doesn’t claim for any physical disabilities and she claims Enhanced for both parts. We have lots of members here on scope that claim PIP because of mental health reasons. It just depends how your conditions affect you.

    Did you have a read of the link I posted? 
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • griff11griff11 Member Posts: 35 Connected
    @poppy123456 I did read the link and along with descriptors on PIP application it focuses on use of aids or appliances.  As an example the link you gave referred to dressing and gave an example of painkillers kicking and affecting ability to dress yourself.  As my daughter explained to assessor.  She puts on underwear, comes downstairs and washes her hands.  Then outer clothes , they have to be inside out and the outside cannot touch her skin.  Once these are on then downstairs to wash hands again.  If outside of clothes accidentally touch her skin they are removed and go into her laundry basket. Aside from slip on pumps someone else had to put on her shoes & socks .  If we are not there then she would simply go back to bed sobbing,  IMO this means she needs help dressing but not sure if this is conveyed based on PIP questionnaire.   We can’t go on holiday and leave her alone as she can’t cope.  Not what we expected in our retirement.  We tried going away for 2 nights and not too far and came home early as I realised she was lying to me that she was ok and her friend rang me worried as she was at our house and our daughter was not answering the door or phone.  She’d had a panic attack and showered constantly for 4 hours.  Yet the question asks can you wash yourself .  Yes she can but not like the average person.

    As you say nothing for not touching door handles but this is huge problem so she won’t go out alone as she can’t open doors.  In work she knows she can go to kitchen to wash hands but in public she won’t use bathrooms.  

    I went through the PIP process for  my husband after a serious accident and found it much more straightforward to answer the questions as his condition was mainly physical and easier to evidence effect of multiple fractures to spine /neck as we were over a year on and his recovery had peaked .  
  • poppy123456poppy123456 Community champion Posts: 18,542 Disability Gamechanger
    Have you not considered the reliability criteria? Any activity that can’t completed in a reasonable time cannot be completed reliably and therefore points should be scored.

    The link i provided tells you all about prompting and assistance, it doesn't just tell you about aids/appliances.

    Request a copy of the report a week after the assessment and if it no award is recommended then the MR letter of request can be started. You can't request it until the decision's been made though.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • cristobalcristobal Member Posts: 963 Disability Gamechanger
    edited February 8
    @griff11 - does this help, as regards MH disabilities? It's from the DWP Guidelines....

    "A health condition or impairment may be physical, sensory, mental, intellectual or cognitive, or any combination of these. The impact of all impairment types must be taken into account across the activities, where they affect a claimant’s ability to complete the activity and achieve the stated outcome. For example, a claimant with a severe depressive illness may physically be able to prepare food and feed himself, but may lack the motivation to do so, to the extent of needing prompting..."

    Several of the activities have descriptors which refer to 'needs prompting' - dressing, washing and bathing etc - so you might like to look closely at them (assuming they apply of course - you will know best)

    Good luck...
  • woodbinewoodbine Member Posts: 929 Pioneering
    My daughter had a period when she had OCD while recovering from anorexia, she was put on medication (cant remember what) and after 6 months she started to improve.
  • griff11griff11 Member Posts: 35 Connected
    @poppy123456 @cristobal  thank you .  I’ve been through appeal process with my hubby so I’m ok with process but I’ll focus my responses in reliability, time etc.  for my daughter .  It’s horrid how I’m assuming it will be a negative decision from the off.

    I was successful with my OH appeal as they rang before it went to tribunal and asked him a couple of questions and reviewed their decision to his satisfaction.

    @woodbine. I’m so pleased your daughters OCD has improved and hope she is recovered from her anorexia. Must have been a very difficult time for you all.  My daughter been on medication for about 18 months .  She’s on a lower dose now and she tried to come off last year via controlled lowering of dose but after issues in work which were so bad she resigned after working there 2 years her OCD flared up again so badly she went back on her meds and just this week increased dose as she’s been struggling.  We are hoping the intensive OCD course will improve her wellbeing as the testimonials of it brought her to tears as past clients said it had changed their lives.  My daughter is a very intelligent girl with a biomedical degree from a top uni and has researched and understood what OCD is but it’s still dominating her life . 

    I’ll ring in a week or so and ask for copy of assessment report. I had my hubby’s and I think they sent at the same time a copy of the decision makers comments which made it easier for me to highlight contradiction on assessor observations and their random decision.  

    Thank you all for your help and advice 
  • OverlyAnxiousOverlyAnxious Member Posts: 469 Pioneering
    griff11 said:
    Next step is a 5 day intensive course in England.  It’s very expensive but she can’t go on like this .  
    Hi,

    Sorry to hear about your daughters current situation.  I also live with severe contamination OCD and am in the process of trying to claim PIP - but like you, I've found the descriptors don't really fit.  I failed both the assessment and the MR and am now awaiting tribunal, but don't hold out any hope for that either.

    I was just wondering where this course is please?  I've been looking for one but haven't found any nearby.  I've also not had any luck with support groups either.  There is one locally but I found it so difficult to get there (made 4 separate attempts last year) and once I did get there found it impossible to sit in a room full of people so it was no help at all.  There were also no contamination sufferers there...not surprising in that setting I guess...but makes me wonder where they all are, I've never met another in the ~15 years I've been suffering!  Only found 4 or 5 others online too...

    Good luck with PIP & and the intensive course!
  • griff11griff11 Member Posts: 35 Connected
    @OverlyAnxious sorry you are suffering too.  This is the treatment centre but I warn you it’s expensive https://www.ocdtreatmentcentre.com/

    Two friends have been diagnosed recently in their late 40s with OCD.  Both have been miss diagnosed in the past as generalised anxiety but there does seem to be a growing awareness of condition.  

    Good luck to you too with your PIP but it’s difficult as to many people the intrusive thoughts and avoidance appear to have a simple solution but it’s not that easy unfortunately.  One psychiatrist wanted to put my daughter on anti psychotic meds which she refused .  Then saw his replacement who was horrified at this proposed treatment plan!
  • griff11griff11 Member Posts: 35 Connected
    So I’ve had a copy of assessment report and although they told me when I rang no decision has been made and won’t be for 6 weeks (I rang Friday gas report today) there is their decision scoring in there!  She had zero fir everything .  Each answer is justified because she’s working again and only had 1 day sick in the first month of the job.   Therefore she’s functioning (their words).  The assessment report has set out her issues and noted her demeanour as slightly stressed, avoiding touching door or self snd mildly anxious with a good understanding of her condition.  It noted she needs prompting to take medication but because she understands her condition then she’s able to take her meds with no prompting.  Also noted she can’t prep food but because she’s average build and working she can cook !!!  

    I’ll have to wait for decision letter but know what to expect. I also know from experience they will probably reiterate their decision.  
    It’s clear from the comments justifying their decision that as she works they don’t think she had any issues or requires additional support. 
  • Chloe_ScopeChloe_Scope Administrator Posts: 8,869 Scope community team
    Hi @griff11, yes they do normally go with the report, which is unfortunate in this instance. If it is the same, you do have the option to appeal.

    Here is some information about the Mandatory Reconsideration process, but please do let us know if you need anything else. :)
    Community Partner
    Scope
  • griff11griff11 Member Posts: 35 Connected
    So I submitted the MR 3 weeks ago.  The decision letter was even harsher in its wording about her condition than the copy of the assessment report.  Daughter was in tears as she said they were basically saying you are fine, you work do you are lying it's a mental health condition.  I drafted an 8 page letter addressing every decision with example of issue and why incorrect conclusion by then.  I had given examples in original PIP application and had copy do that was useful.  
    I also sent a copy of her DSA assessment done when she was in 2nd year of Uni.  (5years should).  That assessment set out what OCD is and how it affected her daily and how it would support her.   I also had letter from her private therapist which was part of the DSA to say on the OCD test they did the cut off  for OCD was 40 and daughter scored 113.  I had letter from GP saying she was being treated plus letters from her current therapist.  

    One annoying thing that cane over in their decision was basically because you are intelligent (degree/working etc) you cannot be mentally ill!  I also pointed out you cannot see MH as so many people are embarrassed/ashamed and gave examples of high profile people who had hidden their MH issues but committed suicide.  

    I know for appeal I can get further support from GP as a few weeks ago daughter visited GP before for unrelated medication review.  It was 8,40am appt.  and she was going straight on to work where she normally starts at 8.30 am.  It has been a bad morning so she turned up for appointment with soaking wet hair and she was visibly stressed.  GP voiced his concern to her, asked if she wanted medical student tj leave consult.  Daughter said no she was ok and would go on to work as it helped keep her mind busy etc.  He asked her to ring him at 1.30pm to check in as he wanted to know she was ok.  So kind of him.  

    She's coping ok with coronavirus but she avoids news as it was stressing her telling people to use hand sanitizer!  She doesn't use it as she washes her hands to death!  She has humour about how she no longer looks the weird one constantly refusing to touch things and washing hands !
  • Chloe_ScopeChloe_Scope Administrator Posts: 8,869 Scope community team
    Hi @griff11, I'm glad the reports you have are able to detail your daughters OCD. Of course someone can be intelligent and have mental health issues.

    I really hope the MR goes okay and that you both are managing okay during the pandemic. Stay safe.
    Community Partner
    Scope
  • griff11griff11 Member Posts: 35 Connected
    Hi @Chloe_Scope thank you for your kind wishes and yes she's coping by avoiding news and going out as people wearing masks and anti bacing everything feeds her OCD.  

    We don't expect a quick reply regarding MR as I appreciate DWP under huge pressure with new claimants for UC as a result of the current situation plus they too will have staff unable to work due to self isolating.  I also don't expect them to change their decision as I know the odds are poor.  

    I hope you are keeping safe during this crisis 
  • Chloe_ScopeChloe_Scope Administrator Posts: 8,869 Scope community team
    Hi @griff11, I just wanted to check in to see how things are going. :)
    Community Partner
    Scope
  • griff11griff11 Member Posts: 35 Connected
    Hi @Chloe_Scope .  Thanks for checking in.  No news from DWP about MR yet but I appreciate they are busy.  Aside from that we are all getting in ok!  My hubby has had the shielding letter from Welsh Govt.  so he has to hibernate for 12 weeks!  My daughter is coping by working from home keeping her mind busy and her boyfriend has moved in as alternative was of seeing him for duration of lockdown.   She avoids the news as it stresses her when they talk about how far germs spread etc as all her therapy has been working with her to accept spread .  We struggling to get her outside but gradually she's been coming into the garden to the garden ti gtt fresh air.  She finds it less stressful working from home as she can control the environment and can shout at us not to brush against her or her chair !

    I hope you and your nearest and dearests are staying sane, safe and well 
  • Chloe_ScopeChloe_Scope Administrator Posts: 8,869 Scope community team
    Hi @griff11, glad to hear you are all okay.

    I can appreciate her avoiding the news,, it can be very fully on at the moment. I hope your daughter has still been able to get into the garden. :)
    Community Partner
    Scope
  • griff11griff11 Member Posts: 35 Connected
    So today received a letter dated 2/5 for MR.  They have moved from zero points across the board to:
    • Preparing food  -2
    • Washing & bathing -2
    • Dressng & Underssing -2
    It has repeated in their summary:
    "At the assessment you appeared of average build, appropriately dressed and well kempt (they didn't note she had soaking wet hair as prior to assessment she left work, came home and showered which always involves washing hair as it's part of her ritual).  It is noted you presented with mild anxiety through out though this did not impact on your ability to engage with assessor.  There was no evidenc of low mood and you were able to build a rapport and maintain good eye contact with assessor..  You were able to maintain concentration throughout and resposon to questions in complex senteneces.  You were able to demonstrate logic and reasoning and appeared to understand the process of the assessment.  You demonstrated good understanding of your conditon, how it impacts on your functional abilities and the medication you are prescribed.   You demonstrated good long and short term memory and able to provide a detailed history of conditons.  Whilst it's acknowledge you have a diagnosed MH condition and are receiving specilist input there is no evidence available to support overwhlming psychological distress.  Overwhelming psychological distress means distress related to an enduring MH condition or cognitive impairment which results in a severe anxiety state in which symtoms are so severe that the person is unable to function. The threshold is very high and I have decided you do not meet it. It is noted you have OCD rituals which means that you have difficulty in completeing some of the daily activities in a timely manner.
    ............
    The assessors report is an impartial assessment based on the clinical findings and observations of someone trained in assessing the effects of disability."

    So today we filled in the online appeal form.  We have contested all the points except budgeting decsions and moving around.  We have uploaded evidence:
    • DSA assessment report (disabled student assessment)
    • Therapists letters (2 different therapists one when she was in uni and current one)
    • Email from previous employer where he said he had put her on a new probationary period due to her mental health issues
    • GP letter 
    Again they ignore the fact she had to take both myself and her partner with her to the assessment as she relies on us both greatly for support, espeically in case she has a panic attack.

    Hope you are all keeping well during this current pandemic.  My husband is shielding as he had letter from Welsh Govt. instructing him to do so.  Sadly he has lost his sibling to Covid19 last week.    She had underlying health conditions and had been shileding but with carers coming in multiple times a day she was obviously exposed.

    My daughter rarely ventures out of the house aside from the garden or to sit in car with her partner while he goes to the shop.  She is struggling and now is refusing to use her mobile phone aside from when she's in bed (she thinks it's contaminated and can't move it from her bedside table).  We are also in the position that if we accidently touch her she tries to force us to wash our hands!!  I had this 15 minutes ago but I've refused to now and I'm hoping she's forgotten.  I'm not being mean refusing but I try not to feed her OCD by accommodating her requests.


  • Chloe_ScopeChloe_Scope Administrator Posts: 8,869 Scope community team
    Hi @griff11, I appreciate that with the current situation it might take a bit longer to hear anything back.

    How are things during lockdown at the moment for you and your family?
    Community Partner
    Scope
  • griff11griff11 Member Posts: 35 Connected
    Hi @Chloe_Scope  I've had a letter from Tribunal asking inviting us to submit further evidence like a letter from me detailing how her condition affects her.  I've only just finished letter today as I became quite upset the first couple of attempts as seeing it in writing is grim.  I did the letter giving a bit of background of how it escalated, how we interact with her i.e support, reassurance (worse thing ever for OCD), the treatment we had helped her source both NHS & Private and reasons why and then a typical day.  I referenced in the supporting documentation she had supplied at appeal. The letter states the DWP have to respond by 16th June and they should supply me with details of their response. I've seen nothing yet.   Is there a timescale from this as to when the appeal will be held.  I assume it will be a telephone appeal if we are still in lockdown?

    At home we re still rubbing along!  4 adults, 2 working from home and as we are in Wales still more restricted with lockdown.  We don't/can't venture out much.  My hubby has had updated shielding letter from Welsh Govt. telling him to shield until August.  I've had to buy masks, which I really didn't want to do as this all affects my daughter's contamination OCD, but we might have compulsory situations as lockdown eases.  I've explained to my daughter it's just precautionary to try not to panic her and they are disposable.

    Hope all is well with you.
  • definitelymaybedefinitelymaybe Member Posts: 2 Listener
    hi griff11 i'm new here, hope  your daughter is doing well. Is there a way we could PM each other on here? :) 
  • griff11griff11 Member Posts: 35 Connected
    I've sent you a private message.  First time I've tried, hope it reaches you.
  • Chloe_ScopeChloe_Scope Administrator Posts: 8,869 Scope community team
    Hi, just wanted to let you know that PM's are not moderated by our team. If you receive something that you are not happy with then please do email us at [email protected]
    Community Partner
    Scope
  • definitelymaybedefinitelymaybe Member Posts: 2 Listener
    griff11 said:
    I've sent you a private message.  First time I've tried, hope it reaches you.
    thank you i've finally got round to replying! 
  • griff11griff11 Member Posts: 35 Connected
    Received a text 30th June to say DWP had responded and we should get a copy - nothing yet.  Same text said hearing could be months away.  

  • Chloe_ScopeChloe_Scope Administrator Posts: 8,869 Scope community team
    Fingers crossed it's not much longer @griff11
    Community Partner
    Scope
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