We are a new patient run and patient lead charity dedicated to patients with primary immuno or antibody deficiencies and their carers.
Most of you will already know that the PIA has closed down due to funding difficulties. A group of us with Primary Immunodeficiency’s believe that Patients and Carers will benefit from a support organisation that will care about and fight for their needs so we have set about launching UKPIP.
What is UKPIPS?
UK Primary Immunodeficiency Support. It is currently in the course of having an application for charitable status assessed by the UK Charities Commission.
Who is it for?
It’s for patients with a Primary Immuno or Antibody Deficiency, their partners, carers, families and parents of children with the disease.
We consider all of these people to be our Members. Though we have no intention of charging membership fees nor will we charge for any of the services that we will offer. But we do ask all of you to sign up to the forum at web address http://primaryimmuno.proboards.com
Who Runs UKPIPS?
UKPIPS has been created by a small group of PID patients for the benefit of others. Simply, it’s a PID charity run by PID people for PID people.
Has UKPIPS Emerged from Another Similar UK Charity?
The answer is a definite No! UKPIPS is entirely new because it is concerned by finding ways to support patients with the disease in ways appropriate to identified need. We believe that Primary Immuno and Antibody Deficiency patients deserve and need an organisation like UKPIPS – as it’s absolutely patient-led and not doctor-research led. That is why we have no doctors or immunologists on our Trustee body, though of course, the medical profession is well represented on our Medical Advisory Panel.
Why Create a National Body When Several Local Ones Might be Better?
We feel that a national organisation is far better and much more beneficial to members than having independent local groups operating autonomously and independently.
Why is this the Case?
The first thing to remember is that our disease isn’t exactly top of the list in terms of general medical knowledge about it. Many doctors continue to mis-diagnose immunology disorders because they are relatively uncommon. As a national entity, UKPIPS believes that by working together, we can collectively do and achieve far more for the cause of primary immunodeficiency, rather than depending on smaller, local groups who may well have variable needs at a local level. Surely the best route is to identify whatever those needs may be and to work towards them as a national organisation?
So Typical Examples Would Be?
- We’re all living in an economic climate where financial cuts are a fact of life. In the NHS, we regularly see examples where hospitals have seriously overspent and need to close wards or modify (read ‘downgrade’) services to balance the books. Hopefully – and absolutely hypothetically, this could mean Immunology Centres being diminished in favour of enhanced cardiology services, or that more clinic days are allocated to patients with Aids, at the expense of those with inherited immunological issues. There are just twenty specialist immunology centres across England, Scotland, Wales and Northern Ireland and while it’s unlikely there will be more in the longer term, there’s every possibility the current number might be reduced. UKPIPS would vigorously fight against such rationalisations.
- Despite a great deal of research, we still can’t accurately identify how many patients are allotted to each Immunology Centre to see if there is a pattern in terms of staff resource to reasonably match patient need. We know of one hospital where the hospital Finance Department does not measure the income it receives per Immunology patient. This hospital has just one Immunology Nurse Specialist who has to care for nearly three hundred patients – single-handed. The hospital refuses to increase the immunology staff headcount because ‘it has no visibility’ on related income from those patients to meet increased staff costs. If we had meaningful data, we could then quickly develop a national picture to approach delinquent hospitals and the Department of Health to highlight specific locations where there are serious staff/patient deficiencies and to campaign for improvements for both sides.
- Then there’s the question of continuing education for children with immunology issues. It’s clear a number of children are long-term absentees from schools because infections are keeping them at home; yet individual schools are failing to recognise immunological problems as genuine cases for special needs. Parents find themselves being forced to send children to school when they’re too sick to attend and with education authorities declining to consider or provide resources for either 1:1 teaching at home or enabling parents to assist in home-based education. We have one example of a child approaching GCSE’s who has been unable to attend school for nearly a year who is now seriously behind with course work. The parents are receiving no support from the school or their local education authority because neither body comprehends the nature of the child’s disease.
Those are just three examples brought to us by CVID patients or parents of CVID children where we believe a national body representing patients of any age has the potential ‘clout’ to start ‘to make a difference. What’s more a number of other organisations who are closely linked to Primary Immuno and Antibody Deficiency patients are very anxious to link with us and work towards many common goals. All those groups are patient and not doctor led. That distinction is important.
So How Are We Going to Do It?
- We already have a number of people who have raised their hands to become Trustees of our new organisation.
- We have at least fifty core members
- We have a patient forum
- We have a new website
But we believe our greatest strength is our size and how we run ourselves. We’re structured to be ‘mean and lean.’ Taking full advantage of modern technology, UKPIPS has no need for an office, paid staff, top heavy management and up-front costs that can quickly suck in money. That’s why we’ve chosen an ‘internet route’ and exploiting it to the full with a regularly updated website, full telephone conferencing and the speed of light contact which is email. Thus, we overcome distance issues and that the vast majority of our members are only a mouse click away from us and from one another.
Taking it a stage further, it’s probably possible (even now) to have an online Annual General Meeting whereby everyone wishing to attend can sit at a screen at home or in their car without too much risk of running the risk of catching another person’s infections!
That’s where UKPIPS is at the moment and we’re by no means finished yet.
So the bottom line here is that all of us who have given life to UKPIPS are adopting the amply-proven K.I.S.S. principle or, Keep It Simple, Stupid. If you don’t know that simile, how about the Zig Zag method? That’s an easy one – where organisations historically Zig in the way they run themselves, UKPIPS prefers to Zag.
Experience in life has this far shown all of us that if you set out to keep things simple and uncomplicated, they usually work! Be in no doubt, UKPIPS has structured itself to put the patient first because:
THE PATIENT KNOWS BEST
THE PATIENT DESERVES BETTER