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 voiceshas, 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 https://www.youtube.com/watch?v=O9Pf-JsFuJk
To join 02076412314; or emailing the team Hend - firstname.lastname@example.org, Lucky - email@example.com, Sophia - firstname.lastname@example.org find out more about what we do contact us on Facebook: https://www.facebook.com/MakeitHappenWPPG; Message through the site; by phoning
Make It Happen Report (Spring 2021)
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.
The experiences that parent carers shared in this survey will allow our team and other stakeholders, to understand the areas that parent carers feel they are supported in and what areas they feel they need more advice, training and guidance in, in order to support their child/ren to their fullest potential. Hence, this will inform our future training sessions for the parent carers and enable us to work with the relevant services co-productively. This should also shin a light for decision makers on the gap areas within the system.
The forum used survey monkey to design a questionnaire consisting of 10 questions and a section at the end for parent/carers to comment on. There was a response of 86 parent carers, but, unfortunately, the version the forum had purchased only allowed up to 70 respondents. Therefore, there is a possibility that we could have obtained more information had we purchased a different price plan earlier. Nevertheless, we trust this sample reflects a true picture of the feedback that we have been receiving from our families during the weekly parents forum meetings and other forms of consultations.
Method and Questions
A multiple choice approach was used to answer the questions with an additional section for additional comments. Please see graphs for questions and responses. Questions were designed in with consultation with 6 parents from our executive committee. Each questions include a space for open comments in addition to Q10 for general comments. All comments are available and attached to this report.
A regional survey was launched but the NNPCF for the London region, with similar questions. The recommendations and summery considered the outcome from the regional survey.
Please see data attached to this report showing results of the survey.
Out of 71 respondents around %93 were satisfied or very satisfied with the service that they have received from Make it Happen during the lockdown. However, we are ambitious to increase this already high percentage.
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
*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
Make it Happen
Tresham centre for disabled children, 27 Tresham Crescent
Chairperson, Hend Rahman
Vice Chairs: Douaa Benkacem