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
Samantha Denney is the Abbey Therapy Practice practitioner in Cognitive Behavioural Therapy (CBT) and counselling. Samantha is a verified and fully registered UK SFTR CBT therapist based in Sheffield. She is also a fellow CRPS sufferer as well as a counsellor and CBT practitioner. She is a fellow supporter of Burning Nights. Please mention our name when you contact her. Her contact details are: Tel: 01142352652 | Mbl: 07483168909
This is a good website for information on how to find your local Counsellor/Psychotherapist and if you don’t find one near your home they also give you suggestions of how to look for one and what qualifications they should have. The majority of the counsellors on their website do mainly private work, however your GP may be able to suggest a local Counsellor that they send patients to on the NHS.
This is a UK directory of counsellors and psychotherapists with information about starting talking treatments.
This 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.
This is the ENGLISH website and project of CRPS Netzwerk.
- 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
This is an important place and source of reference. Your GP can help you cope with looking after or having someone close who has a chronic condition such as CRPS/RSD. Tell your GP that you are a carer or have a family member who is chronically ill and they are then able to support you in any way that they can, for example suggesting a local Counsellor (see below). If you are not registered with a GP then please click this link to the NHS Choices website to find a GP local to you.
This is a UK based website giving information, links and details of various massage therapies available.
There 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.
They have information about mental health problems, including advice for carers, how to look after your mental health and more. (UK)
This is an excellent source of help not just for all areas of mental health issues, but also for help with housing, finances, there are also helplines that you can call for help with legal rights, where to get help, advocacy and other things. If you are having mental health problems, please don’t keep it within yourself it will make it worse later on. Don’t feel embarrassed or worried that it’s not important or it will go away because it never does simply go away. 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)
Address: Mind Infoline, Unit 9 Cefn Coed Parc, Nantgarw, Cardiff. CF15 7QQ
This mental health website has a specific section just for 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 ASSOCIATIONS
Don’t worry this hasn’t been mistakenly included this website in the carers, families & friends support section! This website has a section for carers or people looking after those with chronic pain and has a great download leaflet which is called ‘Waving the flag…For carers of someone.. Living with chronic pain‘
The APMA is a great resource for carers as well as sufferers in Australia. There is a lot of information on help on how to cope as a carers of a chronic pain sufferer, support groups around the country, video resources and more.
If you provide care and support to an adult friend or family member, you may be eligible for support from your local council. This support could include being offered money to pay for things that make caring easier. Or the local authority might offer practical support, such as arranging for someone to step in when you need a short break. It could also put you in touch with local support groups so you have people to talk to.
This website is open for any carer in Australia. There are resources, national advocacy and national campaigns around the different parts of Australia.
Information and support for carers, including an online chat room
This is an excellent website to visit and it is available for carers, family members and friends of someone who is ill, to have a good look around their website. If you need to speak to someone their telephone number is UK 0808 808 7777 and in Northern Ireland is is 028 9043 9843. You can also email Carers UK on firstname.lastname@example.org
This site provides details on who they are, events, membership to the Association, weekly newsletters and more. It is available to members of the public, care professionals and members. Please do take a look you may find out some interesting information.
This is 1 of the CRPS charities in the USA who have been going for over 30 years. They are an excellent resource not just for CRPS sufferers but also for caregivers of sufferers.
- 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/
The Partner Practice represents only St. James’s Place Wealth Management plc (which is authorised and regulated by the Financial Conduct Authority) for the purpose of advising solely on the Group’s wealth management products and services, more details of which are set out on the Group’s website www.sjp.co.uk/products. The ‘St. James’s Place Partnership’ and the titles ‘Partner’ and ‘Partner Practice’ are marketing terms used to describe St. James’s Place representatives.
This gives you a breakdown of benefits available to carers. It gives several different areas for carers who are under 60 years of age, over 60 etc.. There is a telephone helpline which gives free confidential advice for carers but it is NOT 24 hours a day. There is also the UK 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.
This part of the website gives you help with benefits and understanding what is available in the UK.
CAB can give you advice on legal issues, money and other problems.
If you are a carer there is some financial support to help you. The Money Advice Service gives a list of the possible benefits carers could be entitled to.
Please see our legal panel page for more details and information on law firms.
Fiona is a Personal Injury (PI) barrister at Kings Chambers, Manchester, Leeds and Birmingham. Miss Ashworth has been practising PI law for over 25 years and she also specialises in chronic pain and chronic pain conditions like CRPS and fibromyalgia. Fiona is also our charity’s Patron.
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
This website is a wealth of information including mobility, fitness, charities, news & articles, things for children and much more. If you want to take a look visit The Accessible Planet.
We hope that you find the information and support you are looking for as a loved one, carer, family member of friend of a CRPS sufferers. However if you can’t find what you are looking for please don’t hesitate to contact us.
DO YOU HAVE A GROUP YOU GO TO FOR SUPPORT? YES? WHY NOT SEND US THE LINK?
WE WELCOME YOUR SUPPORT!
Last Updated: 04/09/2019