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These tips have been contributed by other parents, carers and professionals. We hope they will give you some ideas to try, but if you need further help why not post a question on our forums or talk to our site experts.
SEND jargon buster
This is a great website to help decipher the mindfield of SEND jargon. Send glossary
Making a complaint
The National Autistic Society has got some useful tips for making a complaint to your local authority or the NHS about a service you've received (or not received). www.autism.org.uk
Balance employment
If you work outside the home in addition to caring, investigate home working and/or flexible working. Have some good, frank discussions - always work from the point of view of "what is best for the business". Recruiting and retaining staff is expensive and you are a valuable asset.
Involving friends and family
People often don’t know how to help unless you tell them. Here's a list of suggestions you can use to ask friends and family for help: How friends and family can help (212.3 KB)
Cura toolkit
Cura is a new website providing tools for families / multiple carers to easily share tasks and information. A useful way of keeping track of who's done what and when, particularly over different locations: curahq.com
Challenging a refusal to assess for services
This leaflet has been produced by the Every Disabled Child Matters campaign to help families with disabled children challenge a refusal to assess their child for specialist service.
Online secure personal network
I've just found out about Tyze secure personal online network designed for carers of people with learning disabilities. You can do practical things to make life easier and keep organized. Stay in touch with friends and family, organise medical appointments, keep track of medications, schedule outings, share stories and photos, store private documents etc. Great initiative by another parent.
Help outside term time
If you need help or a carer ask the school/college/day centre staff if they would like to work for you over the holidays.
New Diagnosis befriending service
Face 2 Face is a one to one parent befriending service for parents and family of newly diagnosed children. This online, email or telephone service has been set up by Scope who are quality controlling it. Tel: 01454 618756.
Ten top tips
The Challenging Behaviour Foundation has brought out an information sheet called 'Ten Top Tips' written by Professor Luke Clements, an expert in Community Law, which offers practical information and advice to families concerned about cuts in funding for support and services. www.challengingbehaviour.org.uk/cbf-resources/information-sheets/ten-top-tips.html
Good practice guide
The Royal College of General Practitioners and the Princess Royal Trust for Carers have produced A Good Practice Guide for supporting carers. It is a self-assessment toolkit, designed so that Primary Care Teams can measure themselves against agreed criteria for the services they provide carers. Download guide
Register with your GP
The Princess Royal Trust for Carers always recommends carers identify themselves to their GP, as PCTs and local councils often run support schemes that are accessed through GPs, but otherwise not obvious or easy to find. They also recommend contacting your local Princess Royal Trust for Carers Centre to find out about help available. www.carers.org/local-support
Carers UK Guide to Carers' rights & benefits
As part of its partnership with Bupa Care Homes, Carers UK has produced free resources for people who care for someone, including this guide to carers' rights and benefits. CarersUK.pdf (1.4 MB)
Fact sheets for carers facing cuts
Here are some useful fact sheets for people with learning disabilities and family carers facing a cut to their service. Mencap_1.pdf (123.5 KB) Law_1.pdf (81.7 KB) Get your rights.pdf (68.2 KB)
Legal Aid
Some friends told me Duncan Lewis offers good legal aid support to families and people with learning disabilities. You can visit his website at duncanlewis.co.uk
The Family Fund
The Family Fund offers grants to low income families supporting severely disabled children. Last year they helped over 55,000 families across the UK. www.familyfund.org.uk
Enduring circles of support
Enduring circles of support are a great way to organise and deliver both short and long term support plans. We've added free downloadable PDF file resources for anyone wanting to set up and run circles of support. www.peteandwendycrane.co.uk
Care workers
Here are two places that specialise in care workers for special needs www.cool2care.co.uk who train care workers and www.snapchildcare.co.uk who find people with experience.
The Mutual Caring project
The Mutual Caring Project offers support and information for older families who are caring for people with learning disabilities. There are various booklets and publications available to support long-term family carers, as well as professionals who are working with older families.
Caring with Confidence
I recently attended a 7-week 'Caring With Confidence Course'. It was free of charge, and run by our local carers group. Absolutely fantastic! Covered all topics, from those who were new to caring to those who were struggling.
Choose your battles
I have learned the hard way to choose my battles carefully. I have to decide which battles really are important for me to win and which I can leave. The important ones involve safety and health. Some others you have to let slip for your own sanity!
You are the no 1 priority
As a family carer, you need to be the no 1 priority, so make sure you eat and sleep properly, and go for regular health checks.
Weight training
I try to keep up an exercise programme – mainly weights, because my son is large and I worry that one day I won't be able to manage him. Being fit has given me huge confidence in how I manage my son, which in turn has improved his behaviour. Exercise is great for your overall mood as well.
Do a happiness audit
Think about what gives you happy feelings and do it as often as possible – whether it's singing, dancing, laughing, sex or chocolate. Create a 'Prescription for change' for yourself, listing the things you need twice a day & twice a week. Then stick it on your fridge!
Stress-busting activities
I always try and do some sort of stress-busting activity, like yoga or T'ai chi, as I find it gives me energy and peace to deal with my everyday caring role.
Schedule time for yourself
Try and schedule time for yourself, take advantage of any help that is offered, and look into other services that can offer you respite. Some carers groups offer relaxation nights, massages etc. You need to keep yourself healthy if you are going to care for someone long term.
Friends and hobbies
Friends and hobbies are enormously important when you are a family carer – especially when they take you out of your role as a carer for a short while. I try and mix with people who aren't carers too, so I get to focus on something else for a bit.
Time out
I started running after the birth of my disabled daughter 8 years ago. It's my time out – time for me to de-stress, clear my head & take out my frustration on the streets! I come back a happier & calmer person, ready to deal with the real world again! I think we all need time out for ourselves.
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