Agenda item

5.1

Helen Moore

My name is Helen Moore. I am a carer for my youngest son, Tom, who lives with us and is in his 40s.  He has learning difficulties and autism.  He has never been employed.  I am in my 80s.  It is essential that we, as lifelong elderly carers, raise awareness to try and prevent the closure of this valuable and unique service for elderly carers in the city.

Please understand and recognise that with the emphasis on “elderly” carers, we have been lifelong carers and as such are pretty well exhausted, many even too exhausted to complain about the possible loss of this service.

We understand that we will be able to go to the KIT offices for help, a visit to town, talking our son or daughter with us, to make sure they are safe, is impossible.  Cathy Oliver and Kirsty Worstenholm will visit us at home.  This is very important.  They know our families and us and I cannot emphasise enough how important this is to us, the visits at home and knowing they will understand, offer help and support and kindness so that we feel we can carry on.  Social workers tend to change very frequently and going over are children’s history again and again each time is upsetting and tiring.

Cathy and Kirsty are the only people we can turn to in times of extra difficulty, even only to hear an understanding voice.  It is enormously comforting to know they are there.  Please, do all you can to save this vital service.  Once gone, like the Elderly Carers Service, it will never return.

We are not asking for more money, we love our sons and daughters, in fact many of us do not receive a carers allowance if our husbands have a private pension, but we are asking, nay, pleading with you, not to take away our only constant source of help, support and reassurance which Cathy and Kirsty have given to us and without which, our advancing years, will be hard and more difficult to bear.

I believe it is a mark of a civilised society that the silent, unpaid carers, are helped, supported and recognised for their valuable contribution.  As my daughter texted when I told her about this news (she lives far away), “What a terrible shame. It seems that anything good and valuable is melting away to leave only difficult hurdles to be managed without support”.

5.2

The Chair thanked Helen Moore for attending the meeting and stated that the officer dealing with this, would provide her with a written response.

5.3

The Chair stated that three questions had been received from members of the public, all relating to Item 7 on the agenda (item 6 of these minutes) (Adult Dysfluency and Cleft Lip and Palate Service) as follows:-

5.3.1

Kirsten Howells -  Programme Lead and Helpline Support Manager for STAMMA (British Stammering Association)

I’d like to briefly read a few comments from just four of the concerned individuals who have contacted us at STAMMA, the British Stammering Association, with regard to the possible closure of the adults stammering service in Sheffield. The individuals have given me permission to share their comments.

Referral rejected in April when the service closed

“I am an NHS nurse and have always stayed as a band 5 grade as I don't feel able to perform well in interviews, due to my stammer, so won't put myself forward for promotion.”

Parent of a young person who stammers concerned about the possible loss of the service

“Think of how hard it must be to face an English oral exam, Modern Foreign Language orals, or any assessment requiring verbal responses, if you stammer or stutter. It would not be right to restrict subject choices to avoid these exams because of speech. What about those applications for college/apprenticeships/work placements? All of these will require interviews in person, over the phone or through video conferencing. These activities are challenging for all young people but are so much more difficult if you have a speech difficulties.  What if, the very person who could help you to prepare for these situations, with whom you have built up trust, having exposed the difficulties you face in daily life, is suddenly no longer allowed to support you through these new, anxiety provoking experiences.”

Previously accessed the service

“Being a doctor was always a dream of mine, and the support I received at Sheffield Children’s has helped me tremendously with my life’s ambition, by teaching me how to live with my stammer. I am now a qualified doctor who does not shy away from how he speaks.”

Previously accessed  the service

“I requested to be referred to speech and language therapy in my early twenties. I was very unhappy and suicidal. My speech was something I could see was affecting me and my ability to live my life successfully. Looking back, therapy was a great experience for me. Before that, I had never spoken about my speech difficulties, let alone been with others who also had the same experience. It was life changing to express something so private and hidden, and have that met and supported, and understood.”

These comments give an insight into the need for a service for adults aged 16+ who stammer, and the potential impact of the loss of such a service. The consultation is likely to unearth more, similar feedback, yet Sheffield Children’s NHS Foundation Trust are intending to close the service again from mid-January. What options have been considered to keep such provision within Sheffield, optimising the existing personnel who have developed their specialist clinical skills over years?

5.3.2

Isobel O’Leary

I want to be clear that the decision to close the Speech and Language Therapy service to adults with disorders of fluency (usually stammering) was made with no consultation, let alone agreement by the specialist clinicians that provide this service. This is very disappointing.

In a separate document I have explained how the reasons given for ending the service are largely spurious. The only point on which I agree is that there is a shortfall in funding to the overall paediatric Speech and Language Therapy Service to manage the increasing demand, and a need for additional funding to provide the specialist service to adults with disorders of fluency.

This specialist Speech and Language Therapy team has worked effectively and efficiently in an integrated way with children and adults since 1992, with 2.5 days a week initially allocated to working with adults. We have managed the waiting lists between adults and the relatively higher number of referrals of children by taking time from the adult allocation to manage children, thus effectively cross subsidising the paediatric service.

We have always been innovative, for example holding evening clinics to fit with the needs of older children, teenagers, parents and adult patients and running intensive therapy group courses for various age groups at NHS and non-NHS sites when clinically appropriate. Throughout the pandemic we very quickly adapted and have provided a largely telephone or video service for all ages, only gradually bringing back face to face clinics when it has been safe to do so. It is likely that the service will continue to offer a hybrid service long term as remote appointments are sometimes preferable for patients as they save travel time and cost, and this way of working can sometimes be better clinically.

I care passionately about helping people with communication difficulties, as the ability to communicate is central to human life and wellbeing. I don’t stop caring when someone reaches the arbitrary age of 16 years.

I will continue to contest any permanent cut to the current Sheffield based specialist SLT Service for those over the age of 16 who have disorders of fluency despite my recent retirement. Elected Members may understand when I say that as a Sheffield street tree campaigner, I have a habit of not giving up.

My question is: Why are you persisting with an expensive and wasteful Consultation process when a simple solution exists that would be better for everyone and most especially patients? That is, maintaining the current specialist Service, with funding for the adult part through a Service Level Agreement with the Speech and Language Therapy Service?

5.3.3

Emily Standbrook-Shaw read out the following question received from Kate Williams. From 1993-2019 I worked as Co-Lead in Disorders of Fluency, employed by SCHNHSFT. I am now retired.

Question: To what extent is the decision to potentially axe the service to people who stammer, aged 16 years and above, driven by SCHNHSFT and/or the CCG, given the likely replacement of the CCG, next April by the South Yorkshire wide Integrated Care System?

5.4

The Chair stated that he would respond to the questions during the Committee’s discussion on the next item of business and thanked Kirsten Howells and Isabel O’Leary for submitting their questions and attending the meeting.