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Carer story – Bethany

We work with a plethora of carers, in all circumstances. Each case is so individual, which is why the time is taken to listen to the carer to really understand how we can help.

This carer story gives a prime example of how we worked in partnership with West Sussex County Council (WSCC) young carers team in supporting carers of all ages.

Caring for their mum

Mum, Bethany, is 36 years old and lives with the conditions Supraventricular tachycardia (SVT), syncope and fibromyalgia. Bethany, will quite often experience blackouts, sometimes without warning, making it a precarious situation for the young children. The three children are 12 year old Rachel, 9 year old Daniel and 9 month old Freya. Sadly, Freya is also unwell, suffering from two holes in her heart, which means she cannot crawl due to the pressure it places on her heart..

Bethany’s mum will visit most days to help around the house and will call Bethany on a two hourly basis to check in and remind her about taking medication. However, the children do a lot of the everyday chores, which includes bathing Freya and keeping her safe when Bethany is unconscious due to her conditions.

Unaware of the support available

It was not until the deputy head teacher of Rachel and Daniel’s school became aware of the extremes of Bethany’s health conditions, that a referral was made to WSCC Young Carers. Since that referral, Bethany and her children have received so much support, such as help with forms and a referral to the CSWS equipment service. Bethany was unaware that this help was available. She said, the support they have received has ‘been amazing’.

CSWS working with the young carer team

The young carer team liaised with the carer equipment team at CSWS to identify equipment to support Bethany’s needs. The main items were: .

A pill dispenser

Which Bethany’s Mum would replenish and set the timers. Bethany added, “There is a key for the dispenser, which is an added security and peace of mind – even if the children went near the medication, I know they cannot get into it. Reduces my anxiety just knowing that.”

One cup kettle

Omg the hot water thing has arrived and I’m in love I’ve never made a bottle so stress free in my life, thank u sooo soo much. It’s honestly the best thing ever, I’ve not burnt or scalded myself once so far, it’s a miracle lol.” “It will also be cheaper to run than our normal kettle so will save me money too.”

Alexa/Echo device

Bethany said, “I had a blackout the other day and ended up on the floor in the front room, I had to stay on the floor, but could ask Alexa to ring mum. It was amazing my phone was in the kitchen and I couldn’t get to it. How reassuring is that!” Also, Daniel finds it difficult to use the phone, especially if mum is having a blackout. Now they can ask Alexa to call whilst looking after Freya and mum.

Impact of the support

The simplicity of the carer equipment made such a large positive impact. It shows how listening to the carer’s needs and providing the right support can lead to feelings of security about medication storage, increased independence, remove potential dangers, such as scalding incidents, and reduced anxiety levels for all involved.

“The regular support for Rachel and Daniel, is brilliant. They get time to just be themselves, being able to chat just about anything other than taking care of me. I didn’t know this support was available, so I am so grateful. They have made sure everything they offer is right for us all. I cannot thank everyone enough.” Bethany.