Danielle Taylor, Continuing Care Nurse Specialist explains: "It is not easy for parents of children with special needs to join in with mainstream playgroups and activities. Often, children need to be monitored all the time so it is hard for them to focus on conversations and to socialise.
“So our bid to the ELFT Charity included equipment for a play specialist, experienced in sensory play, and other health professionals. This meant that parents could have time away safe in the knowledge that specialist nurses were looking after their children. This gives parents time to talk to each other to share experiences and tips, talk to the team and to hear about support available.”
Listening to Parents
The timings of the gatherings were trialled and now the ‘Coffee Morning’ has been rebranded as a HIE and CP Support Group, (That stands for Hypoxic Ischaemic Encephalopathy and Cerebral Palsy) now taking place from 12.30-14.30 for babies, children and young people. (Parents said this was the optimum time for them if they had to pick up other children from school. )
The sessions take place every two months and different locations are going to be trialled. (Feedback from families was that they were not keen on all sessions taking place at Richard House Children’s Hospice). Parents can drop-in or stay for the whole session according to their preferences. The impact of these on families has exceeded their expectations.
One family provided the following feedback, “Thank you for welcoming us so well and for such a great opportunity for families like mine to meet.”
Useful Topics
The sessions have different themes and sometimes have guest speakers on topics that could be helpful to parents. Themes have included Mindfulness, Financial Support and Benefits, Education, Social Care Support, etc. One session was an end of year/Christmas celebration that included siblings. It’s important for families to have fun!
Combatting Isolation
Danielle said, “These events are very important to these families who can feel very isolated. They know their babies/children are different to others and joining a local playgroup can highlight their child’s differences regarding their development and needs. Some parents have explained that they avoid doing everyday things such as shopping or going to the park because they may need to use a suction machine which might draw unwanted attention.”
The pandemic lockdown contributed to family isolation for some as parents avoided busy social situations where the infection risk to their vulnerable baby/child could be high. Although the risk level is now lower, it can be hard to change that pattern so the sessions provide a purpose to go out.
Finding Out What Works
Danielle said, “The money from the ELFT Charity has enabled us to test this approach and see if it would be useful to families. It’s amazing how doing something so simple, like providing snacks and a neutral space to meet, has improved family life for this group of parents who have such a lot on their plate. Knowing the sessions make a difference and having feedback from parents means that we can seek more permanent funding to continue.”
The team have been successful in getting resources from other agencies including Asda who have provided £100 worth of tea and coffee, snacks and gifts. The ELFT Charity funding also supported the purchase of parent pamper kits and gift cards which have been hugely appreciated.