Healthwatch Bristol Engagement Summary: Claremont School

You Said, We Did.

Healthwatch Bristol Engagement Summary: Claremont School.

Author: Ellen Devine, Healthwatch Bristol Development Officer.

()

Contents:

Section 1: Details of the project

Section 2: Summary of feedback

Section 3: Healthwatch Next Steps

Section 4: Healthwatch Contact Details

Section 1: Details of the group.

Claremont School is in North Bristol, catering for children from 2 to 19 years old who have physical disabilities and a range of additional and/or associated learning needs, sensory impairment and a range of health needs.

Ellen, Healthwatch Bristol Development Officer, attended a Parents Coffee Morning of 20th November 2014 to listen to parents, Post-16 pupils and staff about their experiences of health and social care services.

Section 2: Summary of feedback

Feedback from parents and staff:

Transition:

Health and Social Care professionals don’t always do what they say they will do – especially in adult services.
Commentator said that the transition process for her daughter (who is 19 years old) has been “scary”; the Social Services Transitions Worker has not been good at communicating and the service is slow. The commentator has been waiting for a Carers Assessment for months and is still waiting, but social services just keep giving her more excuses. Commentator says that she has to keep chasing social services otherwise she’d be forgotten about. Commentator said that The Carers Support Centre has been very helpful as has Claremont School. The commentator’s daughter will leave school in July 2015, but the family and school are still waiting to hear where she will be moved to after leaving school. This is making it hard to prepare for the transition and is causing a lot of stress and anxiety.
School staff commented that services won’t commission adult care for pupils until near the transition date and that this causes uncertainty and stress for young adults, their families and the school. It was reported that people receiving Continuing Health Care funding had their adult care sorted out sooner than those receiving Social Care Funding. The majority of pupils are, however, in receipt of Social Care Funding and as such do not receive much notice of where they will go after leaving school with many pupils only being told in June which is one month before the end of school.

One pupil, who is 19 years of age, indicated that he doesn’t know where he will go during the day/ what care setting he’ll be in when he leaves school next summer and that not knowing is “bad” and he’d like to know what will happen to him next.

Ellen discussed with everyone the idea of developing a Young Adults Transition Card. The feedback from staff, parents and pupils was that a card would be useful as a prompt to hospital staff to remember the young person needs to be listened to and included in decision making.

Emotional Wellbeing and Mental Health Support:

Staff and parents commented that there is a lack of emotional wellbeing support for children and young people with complex needs and learning difficulties.
Staff commented that: children often display frustration and anxiety which is often hard for them to express; some pupils struggle with a period of realising their disabilities and grieving that their bodies will not do what they want them to do; children and young people are anxious about being changed by adults in the bathroom, worry about how they look, relationships and comparisons to siblings and friends who are not disabled.
Young people with disabilities need time and space to talk about what they can achieve and do instead of a focus on all the things they can’t do that other people can. A focus on their disability, lowers self-esteem.
Even when young people are able to ask for counselling support, it is much more difficult to get CAMHS support that is suitable for their communication level. One commentator said she tried to get support from CAMHS for a young man with learning difficulties, but, after a 18 month wait for an appointment, due to poor communication between CAMHS staff and the boy’s parents, he was never seen by the service.
It was felt that it’s hard to know who to contact for psychological support for children with learning disabilities.
Staff felt that there is a stigma and fear about mental health diagnosis and treatment (for example, being “locked up in a mental hospital”) and this stops young people and families asking for mental health support.

GPs and Community Paediatricians:

Continuity in the person families are treated by is essential.

Continuity: Example One – Positive Feedback: One commentator has seen the same GP and Community Paediatrician for the majority of her son’s life and says that the service has been wonderful: Leonard Bishop GP Surgery (Bishopsworth) – “our GP is fantastic and still does home visits for my son; the continuity is a massive help.” With regards to the commentator’s community paediatrician who they see at Knowle Health Centre, the commentator said: “I’m going to be sad to have my last appointment with her” and said it’s a great help to have the Community Paediatrician act as the lead for her son’s care.

Continuity: Example Two –Negative Feedback: Another commentator’s daughter is a patient at Shirehampton GP Surgery and says: “9 times out of 10 you don’t get to see your doctor which means you spend the whole appointment explaining background information [about daughter’s disability] and then have seconds left to explain what’s actually wrong on that day, like they’re sick or have a cough.” Commentator’s GP failed to diagnose that her daughter’s shunt had blocked and this could have been life threatening.

Continuity: Example Three: The group also commented that for parents for whom English is not their first language or who have communication difficulties themselves, having to repeat yourself to lots of professionals is often very difficult and stressful. It would, therefore, be better to have continuity of staff.

The group commented that “getting through GP receptionists is horrendous” and if you have a child with a complex disability you shouldn’t have to explain what you want an appointment for to the receptionist as they are not medically trained and will not understand your child’s needs.

School Nurses, Physiotherapists, Speech and Language Therapists and Occupational Health Therapists:

Having named school nurses for each pupil at Claremont School is a good improvement.
Commentator was grateful to the school nurse for sorting out nappies for her son.
Claremont School has Physios, SLTs and OTs based in the school and the group said the service they provide is very good and it’s helpful to have them located within the school as it helps with communication between school staff and health professionals.
One commentator said the Community Occupational Therapist had sorted out a bath seat, changing table and chair for her son and they had been “brilliant”.

Continence Service:

There is one continence advisor for children for the whole of Bristol and this is not enough.
Commentator asked for liners to use in addition to her son’s nappy at night and was told she would have to weight and record her son’s soiled nappies in order to prove that she qualified for the liners. The commentator did this and described is as “undignified and horrendous” for both her and her son. She was then refused liners as the nappies were not heavy enough.
Group report that everyone received 4 nappies per 24 hours and that this is not enough for many young people. They also report that you do not receive extra nappies when your daughter is on her period. One parent was spending £98 per month on additional nappies for her son.
Group report that it is difficult to get the right sized nappies and one parent had to fight to get the size her son needed as it was more expensive than the smaller size and that continence service were willing to provide.
The group felt that South Gloucestershire Continence Service is better than Bristol.

Staff Attitudes:

Staff should communicate with young people with complex needs and tell them what they’re going to do, not just do things to them. This make take additional time and as such, appointment times should be longer (especially the first appointment with a professional).
Professionals should speak to the young person, not their carer and should ask permission before they do things such as weight the person, take their temperature, remove their clothes.
One pupil felt that it’s good when doctors or nurses offer you a cup of tea.
Commentator visited a young person when they were an inpatient at Bristol Children’s Hospital. A doctor came into the room to see the young person and said he needed a urine sample. The doctor then lifted up the bed sheet and said “has he got a willy then?”. The young person was visibly upset by this behaviour, but could not speak to express that feeling. The commentator found the doctor’s conduct disrespectful.
Medics sometimes don’t realise or focus enough on what a young person can achieve and this can disempower both the young person and the family. It was felt by the group that medics have a very negative view of disabled children.

Changing Facilities:

The disabled toilets and changing facilities at Bristol Children’s Hospital and the BRI are not good enough as there are not appropriate changing beds or hoists. One commentator reported an incident of asking to access the disabled toilet at the BRI main reception and being told by the receptionist that she couldn’t find the key so couldn’t let the commentator in. Another commentator said that the mobile hoist at the Children’s Hospital is often difficult to locate.
One commentator said that the changing facilities in the Brunel Building at Southmead Hospital were good.

Peer Support for Families:

Parents said that it is really useful to speak to other parents of children with complex needs about their experiences and in order to share knowledge and receive and offer support.

Section 3: Healthwatch Next Steps

All the feedback provided by the group has been inputted to Healthwatch Bristol’s database of issues and concerns. It will be included in the Healthwatch Bristol Quarter Two Report. Healthwatch will be sharing this report with Healthwatch partners including Bristol CCG, Bristol City Council, The Care Quality Commission, NHS England and Healthwatch England.The report will also be presented to the Healthwatch Bristol Advisory Group to propose further uptake of the issues identified in this report. The report will be available on the Healthwatch Bristol website ( and circulated to our mailing lists via the monthly e-bulletin.

Healthwatch will share the feedback with Bristol CCG who are currently in the recommissioning process for Children’s Community Health Services.

Young Healthwatch Claremont Post-16 Champions:

Healthwatch will work with Claremont School Staff to arrange a fun, interactive day with Post-16 pupils to induct them as Young Healthwatch Champions and do work towards the projects they are already undertaking to explore who they are and build self-esteem. This work may include: creating videos to show to health care professionals; compiling folders or iPad Transition Books with pictures of all the things each person can do which can be shown to adult services practitioners; developing a Young Adults Card; raising awareness of young people’s rights under the NHS Constitution.

Section 4: Plans for future work between Healthwatch Bristol and Clairemont School.

Healthwatch welcomes and encourages pupils, staff and families to continue to contribute their feedback to us using the communication methods included at the end of this report.

Healthwatch also supports members of community groups to become Volunteer Champions so that they can represent the experiences and needs of their community group. If anyone would like to find out more about volunteering with Healthwatch, they can contact us using the details below.

Section 5: Contact Details for Healthwatch.

We want to hear from you about your experiences so that we can tell services your needs to create the best local services.

Text us - text bris followed by your message to 07860 021 603

email us at

Call us: 0117 2690400

Write to us at: Healthwatch Bristol,

The Care Forum, TheVassallCentre,

Gill Ave, Fishponds, Bristol, BS16 2QQ

Or visit our website to see more at:

Healthwatch Bristol Engagement Summary: Claremont School 20.11.14