GNM was referred to us from a local CCG back in 2017, at the age of 7. Not only was he a new referral, he was also new to the country, as the whole family moved to the UK from Brazil (Mum, Dad, Sister and GNM). This was due to the lack of clinical support the family received in Brazil, and they were offered the opportunity to access medical treatment here in the UK.
Since arriving and receiving the support from the local CCG and subsequently being referred to our service; not only have we been able to support the family with night care (5 nights a week). We have also had the opportunity from last year in supporting GNM to access education for the first the time; at the age of 8 (5 days a week). GNM now attends a special needs school with our carers assisting him from home to school via the school bus, supports him during the school day and assists with the return journey home.
GNM has the following complex medical needs
Hydrocephalus with a VP shunt in-situ, Chiari Malformation, Spina Bifida
Tracheostomy in-situ since 4 months of age following a respiratory arrest at 3month old,
Ventilated overnight requiring oxygen only when unwell.
Gastrostomy since 2months of age due to unsafe swallow.
Neurogenic bladder requiring catheterisation 4 times a day and overnight drainage.
Right-sided weakness and limited mobility, self-mobilising in a manual wheelchair.
Therefore the recruitment and training of the support workers are vital to ensuring a high standard of person-centred care is provided. Ensuring a concise rota and comprehensive care plan is in place is paramount to maintaining a good quality of life.
Clinical and Operational Challenges
1. Gaining families trust to work in their home
Initially as the family were used to providing all cares themselves, new to the country, with English being their second language it was challenging in building a working relationship and gaining their trust, however following our process of having defined roles, ECM visit to introduce our service, RCM to recruit, complete rotas and carry out relevant risk assessments with the nurse to provide clinical management and clinical training the family now have a great rapport with the whole team and know who to contact if and when necessary. Additionally, our monthly visits and our spot checks in the home and school largely provides reassurance to the family.
2. A sudden change in the package size and shift patterns
Originally this package was commissioned for 5 days a week as family were in a small accommodation when the family moved to a bigger home the package changed to 5 nights a week. Due to the quality and standard of the care we provide the CCG increased the package with us to cover the additional 5 day shifts at school.
Ensuring the family were given a selection of support workers to meet and greet in a timely manner allowed for the family to be active in the recruitment and selection process of potential carers. Due to the complexity of the clinical training required and the range of shifts to be covered all staff working on the package have been clinically trained to cover both the night and day shifts to seamlessly ensure that aspects of care and shifts are covered.
What GNM’s parents have to say about how this has positively impacted on them as a family
“We arrived from Brazil 2 years ago and I have never had any help to take care of GNM. I and my husband always did everything we could, and it was very overwhelming sometimes.
“Here we could count on the help of carers to take care of him and so we could have some breaks. Bespoke has been helping us from the beginning and with the night carers I could finally sleep the whole night.
“GNM also could start school for the first time due to the help of a carer and they are excellent and reliable and the more important is that GNM is really well with them and likes them a lot, and they arrive home he smiles and gets excited. I’m really happy and grateful for the help I have”
(Copied from an email sent from Mum, permission also given by mum to use the photo on front page)