Points to remember

• Having DLA does not automatically mean you will get PIP
• A child potentially needs more support than a young person/adult, that is why the claim may be reduced or refused
• Mobility component is more stringent, walking distances have reduced
• You have to be UNABLE to perform activities for 182 days of the year, this has Implications for Fabry members who only experience periodic “Fabry Crisis”

Medical Assessment

• Generally your assessor will not be a doctor, they can be nurses, physiotherapist, occupational therapists, paramedics, but all have some medical background

• They may have read about Fabry but it’s how it affects you as an individual that you need to tell them

• They will ask you about how you manage the everyday tasks such as cooking a simple meal, you need to explain why you cannot do this

• Fabry condition varies so it is important to say when you are unable to function; is it all the time, or just when you have a crisis

Hints and Tips

• Be prepared – refresh your memory on what is written on PIP form

• Take someone with you who knows your condition and can speak up if you forget things

• Remember you are observed from the time you arrive

• Remind the assessor TODAY IS A GOOD DAY - otherwise you would not be attending

• You will be asked to perform some physical movements remember: IF IT HURTS DON’T DO IT YOU WILL NOT BE PENALISED FOR THIS

Appeals and Tribunals

• A revision request must be made in writing – This is a Mandatory Reconsideration- MPS Society can help you go through the reasons refused and look at the descriptors, additional medical evidence may need to be supplied

• A right to appeal will arise once the revision request is considered, appeals are made in writing directly to the First-tier Tribunal and again we can help with this

Moving from DLA to PIP

Many of you may have received DLA and then found that allowance had reduced or been withdrawn when you changed to PIP at 16 years old. I would suggest that if you have previously completed the forms yourself it would be helpful to ask me first to help with the PIP form rather than waiting till you have been turned down, and then struggle to do a Mandatory Reconsideration. I have generally found that you need to put in a lot more specific examples than members generally do.

Why mental health and Fabry are related

This is an area which many of you struggle with whether you are a young person or an adult. There are many reasons for this, but for many, it is the impact of the symptoms making it difficult to engage in activities.

Things to consider

• Try to do something that you enjoy on the days when you are more able, such as meeting friends, going to the cinema, watching a funny film, going for a short walk in some green space, painting, and singing.

• Talk to other Fabry members, sometimes it’s easier to talk to someone who is not a family member. The society can put you in touch with other members

• Try to get outside wherever possible, even for a short time

• Talk to your specialist centre if your mental health is suffering, they will either have therapists who can help or be able to sign post you to the services who can help in your area

What else you can do

• Speak to your GP who can help with local services and next steps

• The charity MIND may be able to help and put you in touch with local services

• ‎Our conferences are always a good place to come and meet and engage with members and clinicians from the Fabry community and have fun at the same time

Points to remember

• Having DLA does not automatically mean you will get PIP
• A child potentially needs more support than a young person/adult, that is why the claim may be reduced or refused
• Mobility component is more stringent, walking distances have reduced
• You have to be UNABLE to perform activities for 182 days of the year, this has Implications for Fabry members who only experience periodic “Fabry Crisis”

Medical Assessment

• Generally your assessor will not be a doctor, they can be nurses, physiotherapist, occupational therapists, paramedics, but all have some medical background

• They may have read about Fabry but it’s how it affects you as an individual that you need to tell them

• They will ask you about how you manage the everyday tasks such as cooking a simple meal, you need to explain why you cannot do this

• Fabry condition varies so it is important to say when you are unable to function; is it all the time, or just when you have a crisis

Hints and Tips

• Be prepared – refresh your memory on what is written on PIP form

• Take someone with you who knows your condition and can speak up if you forget things

• Remember you are observed from the time you arrive

• Remind the assessor TODAY IS A GOOD DAY - otherwise you would not be attending

• You will be asked to perform some physical movements remember: IF IT HURTS DON’T DO IT YOU WILL NOT BE PENALISED FOR THIS

Appeals and Tribunals

• A revision request must be made in writing – This is a Mandatory Reconsideration- MPS Society can help you go through the reasons refused and look at the descriptors, additional medical evidence may need to be supplied

• A right to appeal will arise once the revision request is considered, appeals are made in writing directly to the First-tier Tribunal and again we can help with this

Moving from DLA to PIP

Many of you may have received DLA and then found that allowance had reduced or been withdrawn when you changed to PIP at 16 years old. I would suggest that if you have previously completed the forms yourself it would be helpful to ask me first to help with the PIP form rather than waiting till you have been turned down, and then struggle to do a Mandatory Reconsideration. I have generally found that you need to put in a lot more specific examples than members generally do.