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My PIP experience

Madelin Member Posts: 9 Listener
edited May 2018 in PIP, DLA, and AA
I have been through hell and back with PIP and the 'great' DWP  hierarchy!
I have intractable epilepsy and have input from a top world reknown consultant epileptologist who is fantastic.
He wrote to the DWP supporting my case and they completely ignored what he said!
I had a Paramedic one to one assessment and she was more interested in her computer than finding out the facts.
Turned down but appealed which took 6 months minus 2 days to be heard and I was not present as had booked a holiday as expected it to be sorted in that period! Mistakenly!
The whole situation has caused me and my husband a great deal of stress. I  was not believed and that was the worse part.
I am livid even though today i received a letter stating the appeal had been successful.

Why is it that if  you have an un seen disabiity they do not take this into account and accept that it is unpredictable?
I do not live the condition I live life.
I have been in a situation of being made medically retired by the NHs from nursing and was very depressed.  I decided to fight it and work for myself training people about Epilepsy with the support of my husband.
I could sit about feeling sorry for myself but dont and this I feel went against me.

I had a tonic clonic seizure less than a month ago and had severe bruising, broken tooth and was unable to get about for nearly a week- but to DWP that dosent count!

My MP Sir Hugo Swire has been great as has his personal secretary Sue Townsend I thank them for fighting my case.  Epilepsy action have also been fantastic


  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    Hi @madelin, welcome to the community! It's great to have you here.

    Thank you for sharing your story with us- I'm so sorry to hear about what you've been through, and I'm sure many of our community members will be able to empathise with your frustrations. I'm so glad to hear that you've now had the support of your MP and ultimately, a successful outcome. Do get involved with the community, and let us know if we can be of any assistance! 
  • FionaA
    FionaA Member Posts: 15 Connected
    Hi Madeline,

    So empathise with your frustration. My daughter has JME and is 26. We have talked about PIPs but right now she is having enough trouble just getting a GP to take her onto their books after her move out of London. It's ironic but she has literally just phoned and asked if I can go back to the latest GP attempt with her as they needed something or another from her about her treatments but won't take her seriously. This time she even had a letter from the local pharmacist who has been filling her lamotrigine etc private prescriptions which she get from the internet service right now as she has no GP. Things us epilepsy free people don't experience!!!! Good luck and so glad they finally agreed with you though also totally hear your frustration about the holiday clash aaarrgghhh. Hugs to you

  • Madelin
    Madelin Member Posts: 9 Listener
    Thank you!  Is your daughter under a consultant anywhere?
    Prescriptions should be free hope she isnt paying for them.
    Something you know but your daughter needs reviews 6 monthly if not controlled which means some Dr has to get their act together and take her on.
    Cant recall what its called but the body that deals with GP registrations should be able to tell you - internet should help.  Its where notes go between changing drs I think.
    alternatively ask for info under the access to health records act ???1992 which old GP / hospital has to provide.  also do you have copies of letters from consultant visits which are your right.  
    DWP are quite honestly useless.  Contact local MP as Epilepsy action have a campaign going about PIP and the disgusting situation that is happening for people with Epilepsy.
    Hope it helps.
    i Live in Devon but go to the National in Queens square for care as guy I see is an epileptologist and specially interested in Epilepsy. Excellent. Also the director of Epilepsy society Chalfont St peter.
    Good luck 
    Madelin x
  • Madelin
    Madelin Member Posts: 9 Listener

    For Fiona A hope it helps!

    NHS general practitioners (GPs) services

    Patient choice of GP practices

    Since January 5 2015, all GP practices in England have been free to register new patients who live outside their practice boundary area.

    This means you can register with a GP practice somewhere that's more convenient for you, such as a practice near your work or closer to your children’s schools. This will give you greater choice and aims to improve the quality of access to GP services. Use the Services near you facility to find out what people say about a GP practice.

    These arrangements are voluntary for GP practices. If the practice has no capacity at the time, or feels it is not clinically appropriate or practical for you to be registered so far away from home, they can still refuse registration. The practice should explain to you their reason for refusing your registration.

    How to register with a GP practice further away

    You may wish to join a GP near work or re-register with your old GP following a move. The new arrangements make this possible; however, there are a few things to consider:

    • Research your options in the area you want to register with, so you choose a practice that is right for you.
    • Compare GP surgeries according to facilities, services or performance before you decide. Ask friends, relatives and others you trust for their thoughts and recommendations.
    • Contact the practice and ask if it is accepting registrations from out-of-area patients.
    • If the practice is accepting registrations, ask for a registration form.

    The practice will decide, following a review of your completed registration form, whether to accept you as a regular patient or accept you without home visiting duties (if it is clinically appropriate and practical for you to be registered away from home). 

    Because of the greater distance to your home, the GP you register with is under no obligation to offer you a home visit. If you are not well enough to go to the practice yourself, then other arrangements will be made. NHS England (the body responsible for buying GP services) ensures that there is access to a service either near your home or at home (if needed). When you register with a practice further away from home, you will be given information about what you should do in those circumstances.

    However, if you are too ill to go to the practice in person, or the practice is unable to help you over the phone, call NHS 111. The NHS 111 service can tell you about access to local services or, where necessary, arrange a home visit.

    Registering with a practice further away from home can affect decisions about referrals for hospital tests and treatment, or access to community health services. Speak to the GP about your options.

    Outer practice boundaries

    In 2012, all GP practices were asked to agree an outer practice boundary. Outer practice boundaries are an expansion of a GP's original catchment area. Whereas in the past you may have had to register with a new GP even after only moving a few streets away, these outer boundaries can be a way to stay registered with your old GP.

    You’ll still have to speak with your GP first and, if appropriate, the GP may keep you on the register. For example, a GP may refuse to keep you on the register if you need frequent home visits but don’t live close to the GP practice. If the GP covers a large area and the travel distance to your home is too long to justify regular home visits, then the GP can suggest that you register with a practice closer to your home.

    However, if the GP decides you can stay registered, then you will continue to receive the full range of services, including clinically necessary home visits.

  • FionaA
    FionaA Member Posts: 15 Connected
    Wow thank you so very much Madeline. We knew nothing of this and have been paying for her meds. So helpful and I will be sharing with her later tonight so we can get on it with a better sense of what she is entitled to. Fabulous ? Fi
  • Madelin
    Madelin Member Posts: 9 Listener

    Fiona A It does say you have to get a form from GP but this could be done through old GP or ?? pharmacy.  Hope it helps 


    If you have epilepsy and take epilepsy medicines, you are entitled to a medical exemption certificate. This allows you to get all your prescription medicines for free, not just your epilepsy medicines. But it does not cover dental charges. You will also get free prescriptions if you’re on certain benefits.

    How to get free prescriptions

    To claim free prescriptions, ask your GP or hospital doctor for application form FP92A. This is the application form for a medical exemption certificate. Once you have filled in the form, the hospital doctor, GP or a member of staff at your GP surgery will sign to confirm that the information you have given is correct. They will then send for an exemption certificate for you.

    Renewing your medical exemption certificate

    Medical exemption certificates last 5 years. It is your responsibility to renew your certificate, so keep an eye on the expiry date. The NHS should send you a reminder one month before the expiry date, but don’t rely on this. To renew your certificate, ask your doctor to submit another FP92A form. If you don’t renew your certificate and continue to use it to get free prescriptions, you could be fined up to £100.

    Reclaiming prescription costs

    You will have to pay for your prescriptions until you have your exemption certificate, but you can claim the money back. To do this, ask the pharmacist for an FP57 receipt and refund claim form when you pay for the prescription. When you receive your exemption certificate the start date will be one month before you applied for it. You will be able to claim the money back for any prescriptions you paid for after the start date. There is information on form FP57 that tells you how to claim the money back.

    Using a prescription from England in other parts of the UK

    If you need to get an English prescription dispensed from a pharmacy in Wales or Scotland, you can use your medical exemption certificate to get it for free. All UK prescriptions are dispensed free of charge in Northern Ireland.

  • FionaA
    FionaA Member Posts: 15 Connected
    Thanks so much again, this will really help with the budget ?. Like you my girl won't give up but she can get overwhelmed by external stimuli and so can actually be experiencing an absence when discussing difficult things with a stranger, which of course then leaves her feeling all kinds of bad things about her own competence. so sharing all this will really help her see that decent medical care is her right and she is not begging. Fab Fab fab xxxxx
  • Madelin
    Madelin Member Posts: 9 Listener
    Look me up on facebook  madelin Bexon
  • Madelin
    Madelin Member Posts: 9 Listener
    There are also train fare disability passes i/3 off for person or/ and passenger with them 
    £36 ???  for three years. 
  • FionaA
    FionaA Member Posts: 15 Connected
    Great will look, tried to find Madelin Bexon on Facebook but it didn't find that spelling. I am Fiona Archbold so maybe you can find me. X 
  • Madelin
    Madelin Member Posts: 9 Listener
    Try maddie bexon or mbtraining exeter


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