News & Reports

It's Carers Week and the theme this year is making caring visible and valued. Joining the collective voice of over 96,000 parent carers who work in 152 parent carer forums across England is a powerful way to do this - the more voices Make it Happen has, the stronger we'll be! By sharing our views and experiences with our local authority and health providers we can continue to shine a light on the vital role that parent carers across the country play in helping to improve both local and national services for children and young people with SEND and their families. 

Watch this film to find out how parent carer forum members are making a difference: https://www.youtube.com/watch?v=vcfmJHiGoKw or share Contact’s video this Carers Week with others who want to know more about how parent carers can have their voice heard and ensure caring is valued and visible in Westminster: https://www.youtube.com/watch?v=O9Pf-JsFuJk

To join Make it Happen or find out more about what we do contact us on Facebook: https://www.facebook.com/MakeitHappenWPPG; Message through the site; by phoning 02076412314; or emailing the team Hend - chair@wppg.org.uk, Lucky - info@wppg.org.uk. 

Make It Happen Report (Spring 2021)

Introduction

Make It Happen is the Westminster parents forum, an established Network of Parent carers who have children with special Educational needs and disabilities. The vast majority are accessing  one or more of the following services; Social care, Health Care and Education. The forum aims to facilitate training, provide guidance and support for parent carers to  support their child’s life journey through the above services in Westminster.

Every quarterly the forum conducts a survey to ensure that it captures and includes these experiences and those that have recently joined the forum. As this survey was conducted during the lockdown period, we decided to focus on the  following areas; The ‘Make it happen’ services, areas of need, the challenges presented during lock down, service available during lockdown and the mental health and wellbeing of parent carers.

Q2 The top five requested new topics to cover in 2021 are as follows :

1-SEN team and Education  2-Behaviour advice 3- Short-breaks and DCT

4-Speech and Lang and Occupational Therapy    5-Local offer and services available

The choice of weekly speakers in the winter term aimed to cover the areas that parents showed interest in. Sustaining the “Disturbing Behaviour” training for parent carers every Monday. The monthly SEN surgeries and quarterly meetings with the Short Breaks team and the Bi-borough Inclusion team. 

Q 4 & 5, need to be read simultaneously in order to have a better understanding of the data. 

While most responds were from *CYP with and *EHCP. *CYP who were offered full time around %35 while *CYP with an *EHCP are over %84 in this sample. In comparison with Q3 From the answers it becomes clear that many *CYP either with an *EHCP or on an *SEN support missed out on education as home-schooling was the major challenge to our families. The second main challenge was development of new challenging behaviours.

Q6 shows 66.67% of participants sharing that they have had a positive communication with their children’s schools regarding the their CYP’s attendance during the lockdown. 

-Parents were offered to choose only 1 option, in Q7, which they thought is the most crucial reason why they were keen on their *CYP’s return to physical education.

Q8 How did the local authority support your family, through the Short Breaks team or DCT, during the 2021 lock down?

%64 responded -No extra support was offered

%20 responses -They offered flexible direct payment to pay for equipment, toys..etc

8 responded other with comments such as ‘ don’t receive support yet’, ‘disappointed’, ‘endless meetings.’ 

Q10 Was left for parents’ open comments, some of the main comments were:

“The questionnaire is based on school aged children. A survey for parent carers who look after adults is needed.”

“Health services need to provided family friendly services ,easier accessibility and longer appointment times.”

“I appreciate the support that I received from Hend and the outreach worker. I don't think that I could have managed without their help. I was on a breaking point and did not feel supported by anyone but Make it Happen. Thank you so much. You truly care and you give from your time despite having your own challenges yourselves.” 

“Our children have a special need from the first day they were born so I think that the government need to take this into consideration and feel with our everyday challenges and develop a more accessible service more friendly to family and a special treatment at GPs to have longer session easier appointment access that need to be throughout the whole healthcare system as prevention is 60% of the cure it will safe gov money in the long run”

“I am forever grateful for the support that Make it Happen offered especially during the first lockdown when I fall sick and they provided shopping and other support”

Recommendations and Summary

• This survey shows that mental health and wellbeing is an area that has been a clear concern. Not only do we need to think about the mental health of parent carers, in the sense of offering counselling support, but also how they can best be empowered in order to support their children, since the majority of our parents felt worried and anxious about the future .
• Challenging behaviour remains the major area that parent carers express their need for more support and training on. This goes hand in hand with mental health and wellbeing and therapy intervention for *CYP with *SEND.
• It is worrying to see that many parent carers did not receive any additional support despite the exacerbated increase in needs, during the lockdown. The impact of this pandemic will last with our families long after the end of it. Our recommendation is for local services, to create a clear and time bound plan for support to help mend the damage caused. The plans should clarify how the CYP will be supported to catch up with missed education, mental health support, *therapy..etc.
• Coproduction and parents’ representation in the creation of those plans is a essential. The comments and the high participation on this survey suggest how parent carers appreciate participation. Worries about possible cuts to services will increase anxieties and the best way to encounter that is thorough transparency and codesign with the parent carer forum.
• It was positive to see that many parent carers felt that there was good communication between parents and schools. Good practice examples should be shared across the borough and positive learning should carry on post lockdown. Communication is key.
• Make it Happen’s support during the pandemic did help many families and the input from the Outreach and Participation worker was felt and appreciated by our families. Limited funding could be a risk that might affect our ability to maintain this level of support.
• We can see that the flexibility in using the direct payment during the lockdown helped many of our families to secure devices that their children can use for home schooling. The figures from this sample is very different when compared to the regional and national figures which proves the importance of flexibility in services in order to meet the CYP’s needs.

Jargon

*CYP: Child and Young Person

* EHCP: Education, Health and Care Plan

* Therapy: intervention to support the CYP with their development often funded through Clinical Commissioning Groups (CCGs). Such as Speech and Language or Occupational therapy

* Direct Payment: One form of support that can be offered to entitled CYP through care packages.

* SEND: Special Educational Needs and Disabilities

*SEN support: Support that is provided at schools and colleges for children who have needs but don’t meet the threshold for and EHCP

*NNPCF: National Network for Parent Carer Forums