Our last meeting 10-04-17 (Guest speaker Steve Forster – Disability North)

At our last meeting we gratefully welcomed Steve Forster along to talk to us about PIP assessments. Steve works for a charity called Disability North, and they are a charity that ‘provides advice and guidance on benefit claims from initial application through to representation at appeals. Examples of the benefits we advise on include:
• Disability Living Allowance (DLA)/Personal Independence Payment (PIP)
• Employment Support Allowance (ESA)
• Carer’s Allowance
• Attendance Allowance
We can also provide information on all aspects of independent living, such as personal care and leisure. These are often referred to as activities of daily living or ADL.
We have a comprehensive range of equipment and demonstration areas, including an accessible bathroom and living area, stairlifts and a mobility track. Free assessments, by appointment, are carried out by therapists who can give independent guidance on the most suitable equipment for you.’

You can find Disability North at:
The Dene Centre
Castle Farm Road
Newcastle upon Tyne
Tyne & Wear
NE3 1PH

and you can contact them on:
0191 2840480

or email them
reception@disabilitynorth.org.uk

For more information you can visit Disability North’s website here:
DISABILITY NORTH

Steve gave a wonderful and well informed talk about PIP, which he has helped hundreds of people with since 2013. He has found that Fibromyalgia, after mental health, is one of the most asked about disabilities in his meetings. Steve has a wealth of knowledge on both PIP and Fibromyalgia and has over the years gathered a lot of important information that everyone should know when going into a PIP assessment. Here I’ll give you a checklist of things that you need to know/do before walking into your assessment from my notes of Steve’s talk.
First of all I’d like to say, from personal experience, that these assessments are very stressful, I wasn’t quite prepared for how stressful the experience would be for myself. It isn’t a pleasant experience but you are there to explain to someone how Fibromyalgia affects your life on a daily basis, please do not hold back or be afraid to say something. This is not the time or place to be proud or pretend you’re okay when you’re not. I know it’s hard when we spend most of our time pretending that we are alright as living with an invisible disability is hard to describe to loved ones, friends, family, drs, strangers…everyone and hard for them to accept. Trying to keep up with the life we used to be able to lead, often putting on the mask of a smile to either not burden someone, or maybe even try to try to trick ourselves into thinking we can keep up with what we used to before becoming disabled with a chronic condition. Take off that mask, you do not need it here, and try to be as open as possible about how you are affected, no matter how alien and wrong this may feel to you.

• If you have more than one diagnosis (which can so often happen when dealing with one chronic illness/condition) think carefully about how each condition affects you. Look at physical, mental and cognitive issues that you are experiencing.

• With regards to medical/treatment options if you are offered support from a secondary service (other than your GP) TAKE IT! Most importantly, any help we can get is warmly welcomed, but also when you are filling in your pre assessment forms you will be able to list the support you are receiving and this will show them the seriousness of the condition(s) we are dealing with.

• NEVER GO TO AN ASSESSMENT BY YOURSELF. Please, please, please always take someone with you. For one, we have cognitive issues due to Fibromyalgia, so having someone with you will help make sense of the assessment once it’s over and they may be able to remember more about it than you. But they will also be able to stick up for you if you’re having a hard time and back up what you’re saying about how the condition affects you to the assessor.

• Know that you are allowed to stop the assessment if you are unhappy with the professionalism of the assessor. If you feel like they are constantly cutting you off, not listening to you and purposefully interrupting you and talking over you, you have the right to say that it isn’t acceptable and leave. You do not just have to put up with someone berating you and not listening to what you are saying. You deserve to have a fair and quality assessment. You will be allowed to reschedule the assessment.

• Be under the assumption that you are under assessment from the moment you walk into the assessment centre. From the carpark onwards they will be using ‘informal observations’ to assess your needs. Things like your walking ability from the waiting area to the assessment room, what you’re carrying (handbag etc.), if you’ve bent down to tie a shoelace or pick a form out of your bag, what you’re wearing…literally everything. Be aware of your movements, and please do not sit through the full assessment putting yourself in more pain than necessary because you’re trying to be polite. If you need to stand up and move around, do so. If you’re not comfortable do what you need to do to get more comfortable.

• Do not assume the assessor will know about your condition(s) and how it feels to live with them every day. Even if you feel like you’re repeating yourself (and let’s face it, we normally do with all the brain fog going on!) it doesn’t matter, tell them how it is, every day, day in, day out.

• Having someone with you in the assessment is important, as I’ve mentioned above. If your friend/family member/trusted person that you’ve brought with you starts to talk to the assessor describing what you go through (maybe you’re having a brain fog moment and can’t remember something…for instance when I went into my assessment they asked me to list my symptoms..which threw me as I assumed they would have that information already from the pre assessment forms you have to fill in, and for the life of me I couldn’t remember what I go through on a daily basis…which then upset me and made me instantly feel stressed, which in turn made my brain fog even worse…my partner was able to step in and help me out) they are absolutely allowed to do so and if the assessor stops them and says that they can’t hear from them and need to hear it from you…then that is absolute rubbish. Your friend/family member/ trusted person/carer should be actively encouraged to talk and give information on how you are affected daily by this debilitating condition.

• Please do not over medicate before your assessment (well, please do not over medicate ever!). You need as clear a head as possible to be able to cope with the questions and if you are in pain in the assessment, make it self-evident. Tell them. Show them by having to move around in pain until you are more comfortable (if that’s even possible!). You are there to show them how you are affected daily, so show them!

• You will be asked about your condition history, when you were diagnosed, who you have seen, which medications you’re taking. They need this information, but it will also be used as a kind of test to show your levels of concentration. If you want to take a printed list of you medication you can take your repeat prescription lists as proof.

• Remember that this assessment isn’t just about how this condition affects you physically, but mentally too. Your mental health is just as important as your physical health. Tell them how you are affected mentally by your limitations and living everyday life with an invisible disability.

• You know better than anyone how Fibromyalgia affects you, don’t be rushed in your assessment because they need to see someone else, the assessment takes however long you need it to for you to adequately describe how you are affected in every aspect of life, daily. This is your assessment and your time.

• Be brutally honest. I’ve said it before, but I wanted to say it again as it’s so important. There can be a lot of shame and guilt involved with not being able to do certain activities that society may deem you should be able to do. It will be hard to say some things out loud but it is important that you do. You are entitled to PIP to help you in your daily life, for things like when we’re unable to walk or drive to the shops for food, we would be able to afford a taxi..things like that. We aren’t scroungers and we aren’t going to go off to rave it up in Ibiza with our PIP money. This is there to help and support you, and you deserve the help.

If you would like to discuss your PIP forms or assessment with Steve from Disability North please give him a call on their number that I included at the start. Disability North has unfortunately lost funding through government cuts, there used to be 5 fulltime advisors and now there is only Steve. If you aren’t able to get an appointment to see him in person (as you can imagine, they are extremely busy) then please still call and ask if you could speak to him on the phone. He is so lovely and helpful and so well informed on everything that goes along with PIP, and we’re so grateful that he took time out of his busy schedule to come along to our last meeting. We will hopefully have him along again in the not too distant future.

From us all at the Newcastle Fibromyalgia Support Group, thank you Steve! You give support and help to so many people and we appreciate everything you do!

If you would like to have a read through the government’s PIP assessment guide then you can find that here:
PIP ASSESSMENT GUIDE

If you would like to have a read through the governments handbook for PIP then you can find that here:
PIP HANDBOOK

If you can’t get an appointment with Disability North but need help with your PIP forms/assessment you can get help from Citizens Advice.
Steve will be getting in touch to let us know anything else he thinks would be helpful to us and as soon as he does I’ll pop it on the website.

Take care everyone, and remember, you’re never alone.

Alison