Coronavirus: Peterborough parent carers reveal terrible struggles during lockdown

The charity, which works to improve services in the lives of children and young people with disabilities or additional needs, recently carried out a survey to gain a better understanding of the impact the first lockdown had on parent carers across Peterborough.

The worrying results revealed: 

. Parent carers reported an increase in their caring responsibilities for their child with special educational needs, as well as the whole family

. A lack of respite

. Increased anxiety, with particular concerns for the health of their vulnerable children and who would care for their children if they themselves became ill with Covid-19

. Increased stress levels

. Family breakdowns

. An increase in challenging behaviour in children and young people in the family

. Support families were receiving prior to lockdown was suspended or, in some cases, stopped altogether

. Increasing financial pressures from both furlough and redundancies, as well as an increase in expenses relating to children they are caring for due to services and support being removed.

Overall, 75.3% of those responding to the recent survey reported a decrease in their physical and emotional health and wellbeing.    

FVP also saw an increase in the number of families requesting food support via its FareShare scheme.

The charity has been delivering food parcels to people during the pandemic and ensuring families do not become isolated.

It is also producing wellbeing packs for parent carers to raise their spirits during these tough times.

Chief operating officer Louise Ravenscroft said: “Parent carers are not alone and we will continue providing food support, signposting,  information and advice via phone and email if people contact us on [email protected] or 01733 685510.

“We have had a phenomenal number of nominations for wellbeing packs but, unfortunately, we are only able to provide 100.  

“So if anyone else out there can get involved in similar schemes it would make a huge difference to parent carers across the city. 

“Parent carers do an amazing job often in very difficult circumstances and at this time they are coping with so much more.”

Quotes from the recent survey

“Lockdown affected us emotionally as we weren’t going out at all due to shielding. We have started repairing this now but it’s taking longer than anticipated. We are trying to get my son doing as much as possible just now to improve his school/life balance but mainly through outdoor activities.”

“I personally have been struggling mentally with juggling work and kids. I am not able to do the things I was usually doing to keep my mental health up and I feel like I am more house-bound. The uncertainty is making me anxious for our future.”

Personal story - Carol Lawson

We did not see our beautiful 24-year-old daughter Kathryn for 14 weeks after the lockdown in March and that was in hospital. It was awful for us all.

Kathryn lives at Aurora Orchard Manor near Cambridge and usually comes back to our home near Peterborough at weekends, but she has Rett syndrome which has brought many health problems and so she needed to be shielded.

Our option to bring her home until this was over was daunting as we don’t have any help. And for my husband and I to manage her 24 hour care for epilepsy, dystonia, catheter, feeding tube, irregular breathing and more, as well as needing both of us to turn her several times during the night, was not going to work for us.

She was being investigated before lockdown for her worsening dystonia and epilepsy but all her appointments were subsequently cancelled or by telephone, and investigations were postponed.

Her one-to-one carers in her residence are amazing and we have been talking and reading to Kathryn through video calls most days, but we were desperate for close contact.

During this time she has had several health emergencies which resulted in us meeting in A&E. In August at last shielding ended and we could meet at a distance wearing a mask.

For her birthday in August we had a fancy dress party outside and were able to have contact wearing full PPE - Kathryn looked beautiful as Belle from Beauty and the Beast. We looked like we were Smurfs!

Finally we can have her home for weekends under strict Covid conditions but sadly can see how much her health has deteriorated. She is now back having investigations and treatments with Rett specialists through referrals via Rett UK and the neuro team at Addenbrooke’s Hospital.

I hope that we don’t have to do the same lockdown again as we have missed Kathryn so much and of course we’re desperate for Kathryn to regain her health as much as possible before winter.