Contact’s parent champions give evidence to the House of Lords

Friday 23 April 2021

Tags: coronavirus, Covid-19

Yesterday, Thursday 22 April, a group of six parents gave evidence to the House of Lords Covid-19 Committee.

The session was an opportunity for parents to tell the 12 committee members how the last year has been for their family, and what they think the possible long term effects could be – both good and bad. 

Challenging lockdown experiences

Melissa, who has a five-year-old with cerebral palsy, told the committee members: 

“Since lockdown last year, my daughter has developed scoliosis, her mobility has deteriorated significantly and the long-term damage to her hips, toes and joints is evident.  Despite having numerous disabilities, we have had precious few face-to-face clinical appointments.

But this isn’t acceptable. How, as a society, can we justify this neglect to our children in years to come, when disabilities that they now have were entirely avoidable even despite the disruption of a pandemic? For over a year I reached out to the GP, paediatrician, and social services, begging for help but received none. 

After the first lockdown, I called my daughter’s multi-disciplinary team together and asked them to work with ‘blended learning/support’ in mind, so that if lockdown hit again we could move to plan B in an instant. We made plans over the autumn term and in January we seamlessly slotted into remote learning and support.

The outcome was fantastic and my daughter’s academic and social progress has been huge and the relationship with those ‘professionals’ who adopted this strategy has developed into a deep respect for each other. This can only be a good thing.”

Dee, who has a four-year-old daughter with Rett Syndrome, told the Committee:  

“The impact of the pandemic has been is huge: absolutely no break from caring. It’s really, really intense and quite overwhelming and you’re just left to it.  It isn’t just home-schooling; it’s living, breathing physio, communication, lifting, feeding, stimulating, interaction, trying to keep yourself sane, home-school another child.

My daughter’s spine has worsened during lockdown. The waiting lists for urgent procedures means she now needs a feeding tube urgently.”

Parents told the committee what would help 

Ilham, who has an autistic 12-year-old daughter, talked to the Committee about being a volunteer for Contact. She spoke about offering practical and emotional help to families in hospital and why projects like this need funding to continue. She also told the committee:

“Before lockdown we had a wonderful paid carer who came to the house to support Nada, but this stopped in the first lockdown. Nada’s mental health deteriorated. Social services are painfully slow and the reassessment of the care package for 2:1 is looking like a faraway dream. 

The damage is big and the recovery plan for disabled children is vital. A plan that includes mental health reassessment, physical activities re-engagement, and definitely a support plan for carers who are the actual heroes!”

Michelle, whose daughter is nine and has quadriplegic cerebral palsy, and Yvonne, whose 13-year-old daughter has Down’s syndrome, both told the Committee that disabled children must be prioritised for Covid-19 vaccines and that a process needs to be set up so families can get a Covid-19 vaccine off-label. 

Why speaking out matters

The feedback from parents shows how important it is that Contact can help parents have a voice in Parliament, with decision-makers and in the media. 

Sara’s son is six and has complex medical needs, epilepsy, is registered blind and has chronic lung disease. After she spoke to the committee, she said: 

I really enjoyed it in the sense that we felt we were being heard about what we all are facing. I actually really loved getting to hear from like-minded parents and felt that together we would be a fantastic team. 

I do really hope the Baroness and Lord take what we have told them and they get heard. Besides advocating for my son and those like him, I actually enjoyed personally feeling like I had a purpose again. Thank you.

What next?

The committee will write up the evidence along with recommendations they think that the Government should take as a result.

If you would like to be a Contact parent champion and get more involved with our campaign work or speak out in the media, please email una.summerson@contact.org.uk