Support For Carers, Families & Friends of CRPS Patients
When you have someone close to you who suffer from a chronic illness whether it is CRPS or not, you all need support. That means support for carers, families and of course friends not just for sufferers of Complex Regional Pain Syndrome (CRPS). This page deals with where, how and who you can gain support from. The internet is a brilliant source of advice and information however you can get ‘bogged‘ down with all the information available, which is why here we have provided a list of places, organisations and people to speak to either by telephone, email or letter.
Carers are estimated to save the UK economy approximately £119 billion per year in care costs (figure taken from CarersUK report from University of Leeds 2011). This is a huge save for the UK Government and it is about time that they begin to realise that carers, whether they are members of the family or friends or someone the person who needs help doesn’t know, they all need support not just financial but in other ways as well.
For our next local support groups please visit our Events calendar page or keep an eye on social media. We currently have 2 support groups running – Manchester and Bath/Bristol. If you’re interested in starting up a support group in your area we’d be happy to help set one up. We would supply you with the necessary information and rooms.If you’d like to go along to a support group where you can chat with other carers, family members and friends, to meet and just be with other CRPS carers? If so please CONTACT US either using the CONTACT page or send us an email As a start to this very important page we have included a short paragraph from a parents’ perspective on how they feel, what they do to support the sufferer. Also you will see included below there is a close relative’s thoughts on supporting the person with Complex Regional Pain Syndrome.
A mother’s Perspective on supporting someone with a chronic condition such as CRPS
“Jodie* has had an accident” Five simple words that had a devastating effect on the whole family. Left with searing pain and an elective amputation, our beautiful and talented daughter suffers still.
Dad and I have played the “if only” game many times since then. Wanting to take the pain and suffering she goes through; to try and keep faith in the medical profession, knowing the options were reducing with each failed treatment and feeling her pain when they do; trying to keep optimistic knowing your “child” is in pain and suffering.
As any parent knows this is hard because you badly want to take their place so that their life can once again be normal.Being there to support, comfort, give practical help when possible, love, even researching for new sites for new treatments and occasionally just having a really good laugh.
The saying is “Only God knows why this has happened and that everything happens for a reason.” We are still seeking that answer, and no doubt one day it will be answered. But we would finally say that we love her and will keep being there for her.
Christine F.*Jodie is not her real name.
Close Relative’s view on what it’s like having a chronic pain sufferer (CRPS) in the family
Firstly I find it very difficult as a close relative to watch Sam* suffering with the constant pain she endures on a daily basis. Sometime I feel so helpless but try to give as much love and support as I can. I will do everything possible to help and support Sam even if it’s just listening to her. I love to talk to her to see what she has been up to and sometimes I am amazed at what she does. She never lets her disability stop her from achieving anything. I spend hours on the Internet trying to understand CRPS and researching to try and find any new information/drugs that someone has developed. I pray every day that a miracle will happen and truly believe that someone will find a cure for this terrible disease one day. I personally will never give up hope. We have had so many traumatic times since Sam was diagnosed with CRPS but she always pulls through and is just a very brave and amazing person. I am just so very proud to be her Aunty. *Sam is not her real name
SUPPORT GROUPS / WHERE TO GET SUPPORT, HELP OR ADVICE
There are many support groups and other places around the country and the world as well as on the internet that offer advice and information. Here there is a list of people and places that offer information who deal with carers, families & friends of people in pain. If you have somewhere that you go or are involved that is not in this list then please email us or use the contact form and we will look into it and put the link and details on this page or the ‘Support for CRPS sufferers‘ page.
HEALTH inc MENTAL HEALTH
CRPS WEBSITESThis is a great website written in GERMAN for anyone suffering with CRPS in Germany and Austria. They have a lot of help, articles and directories that may assist you as the carer, family member, friend or loved one of a CRPS sufferer.
- PATIENT WORTHY – Patient Worthy is a great resource for anyone with a rare condition like Complex Regional Pain Syndrome (CRPS). It is an online publication that provides fantastic news, information and support not only to patients with rare conditions but also to their families and carers. They provide support for CRPS sufferers as well as their families and carers. Burning Nights CRPS Support is a Partner of Patient Worthy.
- LOCAL GP
MENTAL HEALTHThere are a couple of good websites to visit and helplines to ring, however we think MIND mental health charity is a great place to begin (see below for more details). Not only is there information on mental health issues but also on legal rights, finances and also has a great area just for carers and how to cope as a carer or someone who looks after someone else who is unable to care for themselves. This isn’t just for carers it is also for friends and family who need support – you are not on your own. They have a guide just for carers entitled MIND – How to cope as a carer which gives you helpful advice, tips and resources that you can either use or find. MIND also have an excellent guide to crisis services called -> MIND guide to Crisis Services which you can download. Please do visit the MIND website for more information about mental health issues. If you would prefer to contact MIND a different way, these are their details: MIND Info line: 0300 123 3393 (Open 9am to 6pm, Monday to Friday except for bank holidays) Text: 86463 Email: firstname.lastname@example.org Address: Mind Infoline, Unit 9 Cefn Coed Parc, Nantgarw, Cardiff. CF15 7QQ carers, families and loved ones including how to get respite, carers assessments, supporting someone with mental healh issues or suicidal feelings, wills, getting help in a crisis and more.
CARERS SUPPORT inc ASSOCIATIONSWaving the flag…For carers of someone.. Living with chronic pain‘ email@example.com
- INGHAM GRAHAM WEALTH MANAGEMENT LTD (IGWM) – IGWM are a Partner Practice of St. James Place Wealth Management and are now Burning Nights’ Financial Advice Partner. Should you wish to discuss anything concerning finances or wealth management, don’t hesitate to call on Tel: 01457 864157 | Mobile: 07714 827 210 | Or visit www.igwm.co.uk/
CARERS’ BENEFITSUK Government website that gives you the individual benefits you may be entitled to, how much, how to qualify for it and also help if you have a disabled child. Money Advice Service gives a list of the possible benefits carers could be entitled to.
LEGALBrian Barr solicitors are based in Manchester, UK and deal predominantly with fibromyalgia, chronic pain, CRPS and critical illness legal claims. They also have a regular blog about fibromyalgia and Complex Regional Pain Syndrome.
CONTACT BRIAN BARR Solicitors:Reference: Please mention you have got their details from Burning Nights CRPS charity Telephone: 0808 123 0003 OR 0161 737 9248 Email: firstname.lastname@example.org Website: Brian Barr Solicitors, Manchester Contact Brian Barr via their Contact Us page This is a firm of solicitors in Bath, UK who have specialisms in various chronic pain condition cases such as CRPS, fibromyalgia and others. They also write an excellent chronic pain blog about various aspects of the various chronic pain conditions. If you require legal assistance concerning your CRPS, chronic pain or fibromyalgia please visit BLB solicitors’ chronic pain website. They also have lawyers in other areas of the law such as family, business, Wills & Trusts etc. For other areas of law other than Personal Injury and Medical Negligence, please visit their Main Website.
CONTACT BLB Solicitors:Reference: Please mention you have got their details from Burning Nights CRPS charity Tel: 01225 462871 Contact page: CONTACT BLB Website (chronic pain): BLB Solicitors – chronic pain claims
- CROMPTONS SOLICITORS, Bolton, UK
CONTACT Cromptons Solicitors:Reference: Please mention you have got their details from Burning Nights CRPS charity Tel: 01204 589009 Contact page: CONTACT CROMPTONS SOLICITORS Patron.
- PANISH SHEA & BOYLE LLP, USA – The attorney who wrote this article about the litigation of chronic pain cases such as CRPS/RSD cases, is a trial lawyer at the firm of attorneys called Mr Spencer Lucas and has extensive experience in this area.
GENERAL WELFARE SUPPORT
- REVITALISE RESPITE HOLIDAYS – At Revitalise we create amazing holidays for our disabled guests and their carers. Over the last 50 years we have become both the UK’s largest provider of respite holiday breaks and the UK’s largest residential volunteering charity. We have three holiday locations located in Chigwell, Southampton and Southport, which are fully accessible for wheelchair users. Each location provides the reassurance of 24 hour on-call nurse-led care to those who require it, as well as exciting excursions, in-house activities and entertainment, and the opportunity for both the carer and cared for to enjoy a break. We welcome guests of all disabilities.
- THE ACCESSIBLE PLANET
DO YOU HAVE A GROUP YOU GO TO FOR SUPPORT? YES? WHY NOT SEND US THE LINK?
WE WELCOME YOUR SUPPORT!Last Updated: 05/02/2019