Healthwatch Lancashire meets Maktoom Mummies
The group Maktoon mummies is a support group for women with children who have disabilities and/or Special Educational Needs and Disabilities (SEND). The group enables mothers to come together and chat with other mothers that have similar experiences.
Healthwatch Lancashire representatives firstly visited this group on the 15th September 2022 to listen to the group’s experiences of health and social care services and to provide any signposting information required.
Feedback identified an issue with miscommunication within SEND services and a general lack of support for children and parents of children with SEND.
It was clear that this group required more support and members of the group wanted to gain more knowledge and understanding about what local support was available for them and their children.
As a result, Healthwatch Lancashire contacted the Special Educational Needs and Disabilities Information Advice and Support Service (SENDIASS) team to see if they could attend the Maktoom group and offer advice, information and answer any questions or concerns which the group had.
Some of the concerns raised included:
“I am struggling to get a social worker; my social worker is stepping back.”
“There is not enough information given to parents and I think we need more.”
“There should be more leaflets and information sheets to support us.”
“Will my child get 1:1 at school without a diagnosis?”
“More support for respite would be good.”
Healthwatch Lancashire revisited the group on the 17th November 2022 with two members of the SENDIASS team to facilitate an information event. Twenty-five participants attended the session, and participants had the opportunity to share their experiences, raise their concerns and ask the SENDIASS team questions.
The women at the group collectively agreed that there should be more support closer to home instead of having to travel for appointments all the time. “I shouldn’t have to travel across country for a doctor to see my child.”
One woman spoke to us about her negative hospital experience. She explained:
“There’s a lot of things wrong with the service, there is a lack of care for the children and the parents. Staff don’t have time to properly talk to you and the appointments always feel rushed. Staff are very ignorant and lack empathy for parents. I had to repeat information over and over again when it should already be on the system. I was given the wrong information and also the wrong medication for my child which I think is awful.”
There was a discussion about what support SENDIASS can offer for parents and children with SEND including filling out paperwork and explaining the process of getting a SEND diagnosis. It was discussed by parents that there needs to be more communication between services. There was also a discussion about support available for adults from 18 and over.
One woman spoke about her personal experience with her child who has been diagnosed with autism:
“GP’s have no support for children or parents, its non-existent. I felt lost and unsupported and as soon as the child gets the diagnosis you get discharged and then what? We just get left. We were passed around so many doctors we didn’t know what was going on half the time. I found that the doctors didn’t listen to me and didn’t believe that my child had anything wrong with them, they didn’t take me seriously. Also, I found that my GP didn’t know who to refer to and what to do next for my child.”
The lack of support groups in the area was also raised as a concern and group members spoke about how supportive and beneficial such groups have been for them and their families.
“These groups are brilliant they give us the opportunity to speak to other parents, and get some advice, I think these groups should be up and running everywhere.”
Questions asked during the session were either answered or noted down by the SENDIASS team to take back to the wider SENDIASS team for consideration
The session ended positively and the SENDIASS team agreed to send any support information to the group.
Healthwatch Lancashire would like to thank Maktoom Mummies for sharing their personal experiences with us and we will continue to meet with this group going forward to track progress and continue to record rich stories and experiences.
We also thank the SENDIASS team for their time and support in attending the event and providing information and clarification to the group.