As we’ve already said elsewhere, UKPIPS is run by PID patients for PID patients and because we know what faces you, please look on us as the place to turn to when you need to talk.
It’s not only those of us who run and manage the charity who are there for you – but all those people in our Community are there for you too.
Here are some of the ways we will try to support you:
- If you click on XXXXX on this website, you’ll be switched to a wide range of downloadable information leaflets about the condition and aspects of daily living that are a source of worry for some people. All those leaflets are exhaustively checked and re-checked during the course of their authoring by our own Medical Advisory Panel and User Groups to ensure they comply with The Information Standard. This is a special kitemark we were awarded shortly after we were formed in 2012. Having the Information Standard logo on our publications means the information they contain is bang up to date, there is zero medical jargon and they are written in plain English, so even a child of around ten years of age can easily read them.
- You can join either or both of the two ‘Closed’ groups on Facebook. One is for patients in England and Wales, the other is for patients in Scotland – but quite a lot of people have joined both groups. They are active groups because those who have joined know that in discussing their concerns, they are being aired only with other people who know how a PID can affect them as well. It’s by having these ‘closed’ groups that everyone feels safe and understood and individual health issues today will usually be replied to today by others who are fully understanding, non-judgemental and who will often send you cyber ‘hugs’ of encouragement. Joining either group couldn’t be easier. Just open Facebook, go to UKPIPS England or UKPIPS Scotland and click on the ‘Join’ icon. The Moderator will then introduce you to everyone and ask you to say a little about yourself. From then onwards, you’ll be part of an ever-expanding group of like-minded people who can often be very funny, are extremely caring and will help to buoy you up on days when you feel down.
- We try to hold at least two Patient Days every year in different parts of the country. These are informal events which any patient can attend with their husband/wife/partner/carer and are opportunities for patients in any geographic region to meet up, compare notes and review various topics of common interest. We also work closely with immunology centres across the UK who also want to run their own patient days and want to have UKPIPS there as a tangible patient support group. All patient day events are of crucial importance to us because we can put faces to names but we also get to know people we work with on a much more personal footing.
- Carers. If you have a recently diagnosed PID, the chances are you have a partner, spouse or very close friend you talk to or visit on a very regular basis? You’d be amazed at the number of partners and spouses we meet each year who say, “but I’m not a carer. This person is my husband or wife”. Okay, we won’t argue the toss on this one but a person who shares your daily life and is going to be by your side now that you’ve been diagnosed with your PID is your carer too. They are the ones who will share your worries about your PID. They are the ones who may find themselves having to answer your questions on a subject they don’t readily understand, they are the ones who look for any snippet of whatever to try to cheer you up and they’ll obviously want to support you in any way they can. They may well come with you when you visit your Consultant Immunologist or go to the hospital for your first infusion, they may be present when you encounter many non-immunology people in the NHS who don’t understand your condition – and unfortunately you’ll meet plenty of those, but your carer is the one who may have to fight your corner to get you what you need. They are also the ones who may go on to suffer social isolation as well as you. For example, you might have an invitation to go out with friends or attend an important party but come the day, you may feel too tired or too unwell to attend. This means you’ll miss the event and so might your other half. After all, who wants to go to an event to which both of you were invited but one of you can’t now attend? Like many other lifetime health situations, it’s not only extremely wearing for you but it impacts equally hard on the person with whom you share your life. That’s why UKPIPS places such emphasis on the role of the Carer. Remember, quite apart from the worries and problems we all carry, the Carer of someone with a lifelong illness or an incurable medical condition is carrying two loads of luggage and they need our support as well. So, while the UKPIPS name implies it is only patient-focussed, the reality is we’re focussed not only on you but the crucial ‘other’ in your life who is also helping you with your burden. And that’s why we have a ‘Closed’ Facebook group for Carers as well. It’s there for them to periodically ‘have a rant’ if they choose to – and like the two national groups for patients themselves, only accepted carers will see their posts and come in to provide support and encouragement.
- Obtaining State Benefits can be a battle for any applicant – and especially for PIP, (Personal Independence Payment) that has now mostly replaced Disability Living Allowance (DLA). We can provide you with documentation to guide you through the application process and we can talk to you about completing the form. In fact, if you do apply for PIP or other similar benefit, it’s always best to talk to us before you start to complete the multi-page and very detailed application form. While we can’t guarantee success, you should be aware that we’ve recently provided some vital information to the Department of Work and Pensions that informs their Assessors about PID and how your particular situation should be evaluated in a face-to-face meeting with a DWP Assessor.
- If you would like us to intervene with your GP, employer, children’s school or University on your behalf, we can do this once you have provided us with comprehensive details of your particular issues and you then sign an Advocacy Form authorising us to intervene on your behalf.