An update from our joint Family Forum

An update from our joint Family Forum

Nov 27, 2017

On 10th October five parents met with EACH staff including the Senior Care Leadership Team and Chief Executive Graham Butland for the annual joint Family Forum. This event is always a great opportunity for EACH staff to hear feedback from parents and to share developments within the organisation.

EACH developments

Graham Butland, CEO of EACH, talked about the developments within the organisation including: restructuring the senior management team to build for growth, fundraising for the nook and the increased income from retail. 

Legal Information for families

Caroline Barrett, a solicitor from Irwin Mitchell, attended the day and explained to the group about where they could find important information including rights, local offers, education, benefits and what services other organisations provide. The group discussed additional information and support that would be helpful. We will look to see if there is more information that we can provide and also if it is possible to run a drop in clinic in conjunction with Irwin Mitchell.    

Family Communications

The group discussed Family Corner and its benefits. Rachel Wright reported that hits on the family zone section of EACH’s website had increased. The group discussed the text messaging service and the benefits of having reminder texts.

Care Delivery

Tracy Rennie talked about care delivery and explained the progress that was being made with regard to training of staff and reintroducing care to children with long term ventilation needs. The group noted the problems of recruitment to nursing posts due to the national shortage of nurses. The group acknowledged the benefits of family networking and the possibility of having more events where families can get together for mutual support.

Choir

The parents asked for two points to be considered following the review of the choir earlier in the year.

One was to consider allowing family members of young people who have reached the upper age limit of 19 years  to be able to continue as members. We have considered this and  need to confirm that EACH provides care to  young people up to the age of 19 years and their families. After this time families are unable to access EACH  services, this would include the choir.

The second query was whether the choir, now known as VoicesAloud, would be able to perform in public at the Ipswich Carol Service. This is held at the church in our local hospice community. It was noted that the purpose of the choir is to provide wellbeing support through music and not for fundraising or awareness raising purposes. It was agreed that that this request would be considered, the result of which is that VoicesAloud will be able to perform at the Carol Service should they so wish.

Transition

The group discussed transition into adult services and one parent shared her personal experience and how very tough this process can be. We have recently appointed a Young Persons and Transition Lead to help families with this process, and in addition we will look at how we can help to make this transition much better for families.

For more information about Family Forums and how you can get involved, please click here. Future dates will be advertised in Family Corner.



« Back

« Back

  • We arrived at the hospice feeling scared and alone. We had so many questions – they answered them all and more. Claire, Jacob’s mum
  • Renee loves going to The Treehouse, but it’s great that care staff are also able to visit us at home too. Stacy, Renee’s mum
  • I didn’t realise hope was a gift until I became a mum. My little boy taught me many things and that was one of them Claire, Jacob’s mum
  • Children like Lucy don’t get the opportunity to go to sleepovers or to their friends for tea, so the interaction she has at the hospice is priceless. Heather, Lucy’s mum
  • The play specialists are excellent and I also get inspiration from the activities they organise. Heather, Lucy’s mum
  • EACH helped us with coping mechanisms and special ways of remembering Stanley. Brad, Stanley's Dad
  • I really love going to the hospice. I’ve made friends there and get to do loads of fun stuff. Renee
  • EACH has helped us keep Stanley’s memory alive. And allows us to look to the future Brad, Stanley's Dad
  • I can’t imagine what it would have been like. Nobody should have to, every family should be offered the support we were, and are still getting Claire, Jacob’s mum
  • We are also supported by the 24/7 True Colours nurses and it’s so reassuring knowing we can call on them whenever we need support or advice Helen, William’s mum
  • It’s been a great opportunity to meet other parents in a similar situation, something that doesn't really happen anywhere else. Helen, William’s mum
  • When we first heard about the hospice we were apprehensive because we didn’t know what to expect. When we got there we realised it was a lovely place where Renee would be well looked after, and we would be able to have a much-needed break. Stacy, Renee’s mum
  • EACH helps us to create lovely memories and has played an important part in all of our lives, not just Lucy’s. Heather, Lucy’s mum
  • EACH supports families when they’re at their absolute lowest, helping them to come to terms with their child’s illness, losing them and beyond Brad, Stanley's Dad

The Treehouse

St. Augustine’s Gardens,
Ipswich, IP3 8NS

Milton

Church Lane, Milton,
Cambridge, CB24 6AB

Quidenham

Quidenham , Norwich,
Norfolk, NR16 2PH