Taking control of your caring journey

10th June 2016

Earlier this week, to mark Carer’s Week, parent Doug Morris wrote about the Carer’s Journey and the groups and services you may meet on the way. Now, Doug talks about how to take control of that journey and ask the right questions.

Parents and carers have different approaches when working with the three core services, health, education and social care and a completely different approach to voluntary or charitable services. It is often with the latter that the relationship is good as these services fulfil a specific need and are often flexible to fit in with you.

Sometimes, procedures and policies may stop public services from delivering support effectively or they aren’t flexible enough to meet your needs. This can be frustrating and although frontline staff are able to deliver the defined service; they may be less able to answer any ‘difficult’ questions you may have. Parents find that they get tired and frustrated by the lack of communication and the failure of service providers to give proper answers to questions which, to most, should be common sense.

To be effective your needs must be taken care of too.

To help overcome this lack of communication, you have to be persistent and often a nuisance to get the best for your child. However, by following a few simple rules, a lot of this frustration can be removed.

Ask a series of standard questions that many services find hard to avoid.

Use CLOSED questions, which should get a one-word response, to force the person to give specific answers to specific questions. If the question cannot be answered, then:

  • Ask WHO can answer the question.
  • Ask WHEN it will be answered.
  • Ask WHERE you can meet that person to get the answer face-to-face.
  • Ask WHY a service is delivered the way it is.
  • Ask WHAT specifically is stopping your child getting a better service.
  • Ask HOW you can help the service to work with you.

By asking OPEN questions you should be inviting the other person into some form of constructive conversation, and potentially guiding them into making the decision you want to hear, by allowing them to understand your perspective better.

Remember that you are the expert on your child and often know more about their condition or the difficulties your child faces than they do.

Also bear in mind that in meetings you are an equal around the table and not there to be told what is happening, you should be joining in the conversation and the meetings should make a joint decision with your consent.

Ask yourself some questions

Have a look at the carer’s journey article here and answer these questions:

  1. Which of these stages provided you with the most positive experiences?
  2. What has caused you the greatest challenge, frustration or problem?
  3. What could make the biggest difference if you were able to rethink what you wanted from any of the stages?

You may wish to use the answers to help determine where you need the most help in your caring role, or you may wish to discuss this with the professionals who are working with you, to work out how to get the best from the services that you are having the most difficulty with.

Remember that you are the expert on your child and often know more about their condition or the difficulties your child faces than they do.

You must remember to think about yourself too. By thinking of your own needs and getting a Carer’s Assessment completed through your hospital, local authority or local carers organisation, if they conduct them, you will be better equipped to keep on top of what can be, for very many carers, a 24 hour a day, 7 days a week job. To be effective your needs must be taken care of too.

Doug Morris is a parent and Chairman of Swindon Parents and Carers Advisory. You can contact the group via their Facebook page www.facebook.com/swindonpacgroup or visit the website www.swindonparentsandcarers.org.uk

Useful links

Face 2 Face

Connecting parents with disabled children for emotional and practical support
Web: www.scope.org.uk
Phone: 0844 800 9189 for details of your local group.

Parent Partnership

Provide impartial information, advice and support to children and young people with SEND, as well as their parents and carers.
Web: www.parentpartnership.org.uk

National Network of Parent Carer Forums

There are 150 groups throughout the country who have been set up for parents and carers to have a voice in how their own local services are run.
Web: www.nnpcf.org.uk

Do you think of yourself as a carer? Tell us about your experiences via our Twitter page @weareMFON or drop Emma a line at emma.cooper@carechoices.co.uk

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