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Making a difference: working well with parents of disabled children

Making a difference: working well with parents of disabled children. Wednesday 2 nd July Presentation for non clinical staff in GP surgeries. Today’s workshop. Added insight into how it is for parents of children with special needs. Who are we?. Emma Parker Debbie Collins. Ground rules.

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Making a difference: working well with parents of disabled children

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  1. Making a difference: working well with parents of disabled children Wednesday 2nd July Presentation for non clinical staff in GP surgeries

  2. Today’s workshop • Added insight into how it is for parents of children with special needs

  3. Who are we? • Emma Parker • Debbie Collins

  4. Ground rules • Share and join in • Personal details are confidential • Respect other’s views

  5. Key messages from parent carers • Understand our context -what it is like for parent carers increases understanding • Ease the wait – surgeries can be challenging places sometimes

  6. Life’s realities… • 55% of disabled children live in or on the margins of poverty • Only 50% of families receive DLA • 16% mums & 63% dads in work (61%/86% general population) • Costs 3 times more (studies show families need 10-18% more) • 34% are single parents (26% general pop). 44% of B&H DLA are single parents)

  7. And more… • Children with SEN 9x more likely to be excluded from school • Only 8% of families (1 in 13) get regular support from the local authority • 3 in 4 severely disabled children live in unsuitable housing (23% Compass) • About 3,400 disabled children in B&H and Compass holds data on 50% • 47% of Compass parents no sleep • 76% mental ill health • 65% physical ill health/injury

  8. A different journey • Early Stage: anxiety and effort to secure diagnosis; shock and feelings of helplessness; denial; guilt; crisis as life will now be different; eagerness to put child in hands of expert; isolation. • Middle Stage: coping with conflicting advice; realising things cannot always be fixed; noticing unsustainable physical and emotional effort; emergence of chronic sorrow; navigating service systems; exposure to disability discrimination and lack of opportunities. • Later Stage: reframing ‘normality’; drawing on range of expertise; developing confidence; connecting with other families; advocating for services.

  9. How should we expect parents to be? Tired and grumpy Defensive Used to being criticised, blamed or disbelieved Anxious Confused Over–protective In denial Grieving Variable Not where they expected to be Isolated Disenchanted As well as caring, brave, wise and experts on their own child!!

  10. Family diversity • Different strokes for different folks • Parents need different things at different times • Some parents need more than others • Cuts across socio economic, geographical, gender and ethnic divides • Variety of family backgrounds, cultures and experiences - that address disability in different ways and apply different meanings

  11. What can you do? • In pairs think of a couple of things you do (or could try) that work well or are supportive of parents

  12. Ease the wait • Offer appointments at the start of clinics or during the quieter parts of the day • Quiet space to wait, option to wait in the car • Card to show receptionist so parent does not have to explain in public area (possibly the compass or the carer's card) • Explain time of wait so parent can employ distraction options • Offer home visits?

  13. Good practice tips • Offer double appointment times; try to offer the same GP • Ask if parent uses a hospital passport and bring it along • Ask parent what their child might find stressful • Have ‘easy to read’ information available to help parents explain any medical procedures to their child • Flag child and carer on your computer system • Parent carers might have real health care needs too • Think about having a disability lead in the practice

  14. Avoid judgements and recognise anxieties Work with parents as partners and use their expertise about their child Find time to listen and communicate Be transparent: how, what, when, why Take things at their pace Signpost to Amaze What parents say helps

  15. Where to direct for local help? Amaze • Parent led independent charity • Statutory funding for about half of our work • Fundraise for the rest • 18 part time staff • Parent trainers • 30+ volunteers

  16. What we aim to do? • Support parents with the emotional and practical demands of caring for their children • Make sure their voice is heard

  17. Helpline Publications and website Education Casework DLA Casework Preparing for Adulthood casework Courses and workshops The Compass PaCC How do we do it?

  18. Amaze helpline • Open every morning and one afternoon and evening (termtime) • Very busy! • Respond to all messages • Can ask anything, talk about anything • 01273 772289

  19. Information • Website www.amazebrighton.org.uk • Through the Maze and Next Maze handbooks • Termly newsletter • Factsheets • Leaflet in 7 languages

  20. Questions? Any questions? THANK YOU FOR LISTENING TODAY!

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