Consultation on draft guidance for supporting pupils at school with medical conditions: summary of responses

Consultation on draft guidance for supporting pupils at school with medical conditions

Summary of responses

April 2014

Introduction 3

Overview 4

Summary 5

Annex A: Consultation responses - breakdown by respondent type 10

Annex B: List of organisations that responded to the consultation 19

Introduction

1. The consultation on the new statutory guidance for supporting pupils at school with medical conditions ran for six weeks from 3 February to 14 March 2014. There were 265 responses to the consultation, categorised as follows:

Respondent type - totals

Type Responses

Other 98 37%

Parent/carer 92 35%

Local authority 20 8%

Head teacher/Principal 15 5%

Union/representative body: 12 5%

Professional association 12 5%

Teacher 8 3%

Governor/chair of governors 8 3%

Total 265 100%

2. This report provides an overview of the responses to the consultation and summarises the responses to each question. A full breakdown of the responses to each question is provided at annex A. A list of respondents is attached at annex B.

Overview

3. Responses to the consultation questions were universally favourable, and none of the 17 questions received less than 56% positive response. 89% of all respondents found the guidance overall to be helpful or very helpful. Furthermore, 10 questions received a positive response rate of 68% or greater.

4. Several overarching themes emerged from the consultation. These are:

a. general agreement that the guidance reflects the minimum requirements of good

practice and will impact positively on pupils with medical conditions

b. broad welcome for the focus to be on each individual child and the recognition

that each child may have different needs

c. strong support for the clear message about inclusion in school trips etc and for the

section on unacceptable practice

d. a call for all children with medical conditions to have an individual healthcare plan;

e. a call for governing bodies to be required to audit the implementation of school

policies;

f. concerns about the role and capacity of the school nurse; and the role of other

healthcare professionals eg specialist nurse, children’s community nurse;

g. a need for greater clarity in terms of roles and responsibilities, especially in respect

of the provision of local health services; and

h. greater clarity about the provision of staff training

5. The draft guidance will be reviewed to take account of comments received.

Summary

Question 1: Does the introduction section set out effectively the purpose of the guidance and explain why intervention is needed?

82% of respondents indicated that the introduction is clear and sets out the implications of not providing support to pupils with medical conditions. All unions and representative bodies that respondent to this question felt that the guidance is clear. A typical comment is “The introduction is clear and sets out the purpose of the document”. There were some concerns, mainly from parents, that there will be confusion unless the term ‘medical conditions’ is defined.

Question 2: Is the guidance clear about what issues governing bodies will be expected to consider in making those arrangements and in ensuring that schools develop and implement managing medicines policies?

63% of respondents agreed that the guidance is clear about the arrangements governing bodies will be expected to make, including all governors or chairs of governors that responded. However, concerns about staff training requirements were raised by head teachers, and a number of respondents in the ‘other’ category felt that the monitoring and review arrangements of the governing body should be strengthened through a requirement for an audit.

Question 3: Does the suggested content cover the minimum that is required for good practice?

62% of respondents indicated that the guidance reflected the minimum required for good practice, including all unions and representative bodies that responded to this question. Some responses described this in terms of a “good bare minimum…step in the right direction”. Some concerns were raised about how this would be funded and the role of the school nurse and other health professionals in supporting schools to deliver what is required of them.

Question 4a): Is the guidance clear that decisions about the support to be provided to pupils with medical conditions should be based on the individual needs of each child, on a case by case basis?

75% of respondents indicated that the guidance is clear, including all headteachers, governors and chairs of governors and unions or representative organisations. The focus on the individual needs of each child was well received. However, there was strong support for all children having an individual healthcare plan and there were also concerns about how these would be initiated. There was good support for the recognition that a

child’s medical needs are complex and that support needs will vary from child to child; and for the child to be involved in decisions about their care.

Question 4b): Is the guidance clear about the use of individual healthcare plans, how these are developed and what they should contain?

58% of respondents felt that the guidance is clear about the use of individual healthcare plans. However, there was concern about a lack of clarity about who would draft plans and where ultimate responsibility for their development rests; and the role of the school nurse or other healthcare professional in this. In addition, there were strong views that every child with a medical condition should have an individual healthcare plan and that parents should have a role in their initiation.

Question 4c): The name, ‘individual healthcare plan (Ihcp)’ is very close to SEN Education, Health and Care (EHC) plans. To what extent do you believe this will be confusing in practice?

There were very mixed views on this issue. 24% felt that this would not be confusing, and 36% that this would only be slightly confusing. The consensus seems to be that once people are familiar with using this term, any confusion would disappear. It was felt that it would be most confusing for parents, and some suggestion that there should only be one plan - the Education Health and Care (EHC) plan which may be issued to pupils with special educational needs. The following comment “I think it will be confusing, but having thought about it, I can’t think of an alternative name that would be any less confusing” is indicative of responses as a whole.

Question 5: Is the guidance clear about the need for co-operation and collaborative working arrangements between relevant health services, schools, parents and pupils and provide sufficient information about roles and responsibilities?

56% of respondents indicated that roles and responsibilities and co-operative working arrangements were clear. However, a significant minority expressed concerns about the provision of local health services and felt that too much emphasis was placed on the role of the school nurse. Doubts were raised about the capacity of the school nurse to deliver what is expected in the guidance. There was also some concern that the role of the specialist nurse had not been properly recognised and that the role of parents was not strong enough, particularly as ‘experts in their child’s care’.

Question 6: Is the guidance clear about the need for staff to be appropriately trained and who is responsible for identifying and providing that training?

Similarly, only 56% of respondents indicated that the guidance is clear on the issue of staff training. While there was broad consensus that the guidance is clear about the need for staff to be trained, there was concern about who would deliver the training, once again, often in the context of concerns around the role and capacity of the school nurse. There was broad welcome for the need for all school staff to be aware of any medical conditions pupils have.

Question 7: Is the guidance clear on how medicines should be managed in school?

79% of respondents indicated that the guidance clearly explains how medicines should be managed. Many of the responses were condition specific, but there was broad welcome for the requirement for children to have immediate access to their medicines and to manage these themselves when appropriate ”It is very good that children will be allowed to carry their own medicines and relevant devices and be able to access their medicines for self-medication, quickly and easily”.

Question 8: Is the guidance clear that schools need to have procedures in place for dealing with emergency situations?

76% of respondents indicated that the guidance is clear about the need for emergency procedures. There was a general view that this section would be stronger if there was a requirement for all children with medical conditions to have an individual healthcare plan.

Question 9: Is the guidance clear that pupils with medical conditions should be actively included in and not be prevented from participating in such activities?

89% of respondents indicated that the guidance is clear that pupils with medical conditions should be able to participate in wider school activities such as schools trips and sports. Many respondents welcomed the advice that pupils with medical conditions should be included in such activities unless evidence from a clinician states that this is not possible. One governor commented that “This is part of a fully rounded education.”

Question 10: Is the guidance clear about unacceptable practices?

There was strong support for the inclusion of this section in the guidance and 75% of respondents said this was clear. One head teacher described this section as “very important”, and another respondent stated “I fully support this section. It is simple clear and easy to follow.” A number of respondents suggested that the word ‘generally’ should be removed, representing their view that the unacceptable practices listed could never be considered acceptable in any circumstances.

Question 11: Is the guidance clear about what needs to be done in relation to insurance arrangements?

77% of respondents indicated that the section on insurance was clear and would give staff confidence to provide the support needed. One respondent commented “It is clear that insurance should be arranged and should not be a barrier to supporting children with medical needs.” And another “this will give teachers and other staff the confidence to know there is nothing to be scared of in providing support…”.

Question 12: Is the guidance clear about what parents should do if they wish to make a complaint?

80% of respondents indicated that the section on complaints is clear but there were suggestions that a timescale could be included. There was also concern that parents would still find the complaints process onerous and inaccessible and too time consuming. Greater clarity was requested about the complaints process in respect of academies. One respondent commented “It is really helpful to have this information”.

Question 13: Does this section provide sufficient information about the broader legislative framework and the further information, advice and guidance, and other resources to be provided on-line?

68% of respondents indicated that the guidance does provide sufficient further information and signposting to other sources, so long as the further links, information, advice and guidance, including templates and cases studies is provided as promised.

Question 14: To what extent do you think the flowchart will be helpful in supporting the process of developing and implementing individual healthcare plans?

89% of respondents indicated that the flowchart will be helpful. Only 2% of respondents felt it would be unhelpful. One union commented “We are pleased you put this in, as there is a lot of text, and this makes the process seem manageable”. Some respondents indicated that it will be useful to adapt the flowchart to local circumstances. Others suggested that it might be helpful to add a timeline.

Question 15: Overall, how helpful do you feel the statutory guidance will be in helping governing bodies to put in place arrangements for supporting pupils with medical conditions effectively?

89% of respondents indicated that overall the guidance will be helpful and comments such as “This is a great improvement on previous guidelines for schools' responsibilities towards children with medical conditions” and “Overall this is a huge step forward for children in school with medical conditions. Thank you.” demonstrate how it has been widely welcomed. However, this must be viewed against the concerns raised about how this will work in practice.

One respondent acknowledges “In principle, this outlines what we already do…. The main problem is that schools no longer have full time school nurses, but instead rely on goodwill of interested staff who might not realise the implications of the roles”. There were also concerns that while the guidance gives governing bodies a good overview of what they need to consider, some will find the requirements quite daunting.

Very confusing

10 0 1 6 0 8 0 2 11 38 18%

Confusing 3 2 2 6 0 18 3 1 11 46 22%

Other Total

Very helpful

1 3 2 6 0 35 2 0 22 71 32%

Helpful 10 3 4 9 0 42 7 9 42 126 57%

Not very helpful

1 1 0 2 0 8 1 1 7 21 9%

Not at all helpful

1 1 0 1 0 0 0 0 1 4 2%

15 Overall, how helpful do you feel the statutory guidance will be in helping governing bodies to put in place arrangements for supporting pupils with medical conditions effectively?

There were 227 responses to this question.

Headteacher/Principal Teacher Governor/ chair of governors

Local authority

Pupil Parent/carer Union/ representative body

Professional association

Other Total

Very helpful

1 1 3 9 0 36 2 2 24 78 34%

Helpful 11 4 3 7 0 48 7 6 39 125 55%

Not very helpful

1 2 0 2 0 4 0 2 10 21 9%

Not at all helpful

1 1 0 0 0 0 0 0 1 3 1%

Annex B: List of organisations that responded to the consultation

There were 263 responses to the consultation. There were also 12 anonymous and 13 confidential responses.

Anonymous (Safetuk)

Woodbridge, Keith

rumney, chris

Cole, Angela

Chambers, Avril

Ahern, Amanda

Amaze (Ros Cook)

Anapylaxis Campaign, The (Mandy East)

Arnold, Louise

Ashma UK (Melanie Sturtevant)

Association of College Leaders (Martin Ward)

Association of Young People with Me

Aston, Sally

Atl (Jayne Phillips)

Bailey, Helen

Baker, Joanna

Ball, Tonia

Bannister, Annabel

Barlow, Joanne

Barlow, Nigel (Tring School)

Barnes, C

Behan, Bernadette

Benjamin, Caroline

Bhasvic (Aoife Tobin)

Bloxham, Louise

Bolton, Nicholas (Dorset Ccg)

Bonsall, Judith

Brassington, Cathy

brehm, marion

Briggs, Susan

British Association for Community Child Health (Ben Ko)

British Association for Counselling and Psychotherapy (Jamie Woodward)

British Heart Foundation

Broadwell, Katrina

Brooks, David (St John Ce Primary Thornham Governing Body)

Brooks, Kathryn

Brookside Cp Primary Academy (Sandra Bartlett)

Brown, Louise (Parent)

Brown, Barbara

Browne, Stephen

Buckby, Joanne

Buckinghamshire County Council (Mike Appleyard)

Bull, Rachel

Carr, Paul

carter, marrianne

Castle School (Carol McCarthy )

Catholic Education Service (Cassandra Hurley)

Cheung, Louise

Childrens Nursing Service and Paediatric Oncology Nurse specialist (Andre Clinchant)

Christou, Tina

Clayson, Dylan

Clegg, Lee (London Borough of Havering)

Clic Sargent (Helen Gravestock)

cliffe, wendy (parent partnership oxfordshire)

Coeliac UK (James Fitzpatrick)

Coles, Angela

Complex and medical needs education team (Julia Graves)

Contact a Family (Una Summerson)

Cornall, Mary (Blackpool Teaching Hospitals foundation Trust)

Cornwell, Michelle

Critchley, Gemma

Daley, Stephanie

Derbyshire Community Health Services (Helen Cooper)

Derbyshire County Council (Mick Upsall)

Devon County Council (Kate Clarke)

Devon Hospitals Short Stay School (Julia Allen)

Diabetes UK (Heather Bird)

Dodds, Gemma

Dolan, Sheila

Dorset County Council - Specialist Teaching and Advice Service (Richard Marchant)

Dowling, Libby (Diabetes UK)

Down’s Syndrome Association (Carol Boys)

Dunford, Karen

Dyson, Simon

Ealing Borough Council (Marlon Barnes)

Early years Team Dorset (Marie Harris)

Edgecombe, Denise (Plymouth Community Healthcare)

Education and Inclusion Service (Anne Walker)

Electrosensitivity UK (ES-UK) (Michael Bevington)

Emmanuel Holcombe Ce Primary (Elaine Lorenzo)

Epilepsy Action (Vikki Brown)

Ess /Cas, Durham County Council (Helen Perfect)

Evans, David (Philips High School Governing Body)

Fazakerley, Kate

Field, Ophelia

Fitzgerald, Suzanne (None)

Fowler, Alun (N/A)

Fpa and Brook (Harry Walker)

Freeman, Anita (Member of London paediatric Hiv psychology network)

Fuller, Hannah

Fynn, Barbara (parent of a child diagnosed with Type 1 diabetes in 2008)

Garner, Lisa (Parent)

Gender Identity Research and Education Society (Bernard Reed )

Gibson, Claire (Northamptonshire healthcare trust)

Golding, Fred

Gomm, Janet

Gore, Kate

Gray, Elizabeth

Groves, Dawn

Gunfield, Sonia

Guthrie, Juliet (Holmes Chapel Comprehensive School)

Hal, Michael

Hampshire County Council (Helen Barrett-Durrant)

Hanman, Caroline

Hardy, Nicola

Hargreaves, Melanie

Harper, Rachael (N/A)

Harpum, Elizabeth

Hart, Janette

Hartfield, June (Wye Valley NHS Trust)

Health Conditions in Schools Alliance (Helen Pyper )

Hickmott, Kate

Horn, Martin (Seahawks Diabetic Support Group / Curdridge Primary School Governor)

Horsley, Lesley

Iaps (Independent Association of Prep Schools) (Julie Robinson)

Independent Schools Council (Sunena Stoneham)

IPSEA (Sarah McKimm)

Jewitt, Colette (parent)

Johnson, Lindsay (Mum to emily with type 1)

Jones, Julie (Health)

Jones, Sian

Joshua Tree, The (Lisa West)

Jurczak, Ellen (Diabetes UK)

Kane, Paul

karas, david

Kennt School (P Dick )

Kids Parent Partnership (Medway) (Mhairi Tynan)

kirk, ann (NHS Foundation trust)

Kirk, Ann (NHS Hospital)

LA Governor Hammersmith and Fulham (Marie Thomas)

Laisterdyke Business and Enterprise College (Jen McIntosh )

Lancasterian School (Anne Sullivan)

Lane, Sue

Langridge, Paul (Countess of Chester Hospital NHS Foundation Trust)

Lavender, Donna

Leek, Jo (Suffolk County Council)

Lesbian and Gay Foundation (Heather Williams)

Lester, Gillian

Littel Hearts Matter (Suzie Hutchinson)

Little, Sarah (n/a)

Lodge, Graham (Norfolk Educational Visits Service)

London Borough of Tower Hamlets (Liz Vickerie)

Lynch, Tracy

mackinlay, Alastair

Marlow, Sarah

Mattocks, Catherine (Ashgate Specialist Support Primary School)

may, melissa (personal my son is diabetic)

McCheyne, Janet (Bulphan C of E Vc Primary School)

Mcdonough, Jeni (School)

Meehan, Stephanie (Bridgewater Community Healthcare NHS Trust)

Mencap (Bella Travis)

Mercer, Julie (Benjamin Britten High School)

Milligan, Susan

Mills, Avril (parent)

Moran, Hayley (Parent)

Mowe , Rachael

Naht (Sion Humphreys )

Nasuwt (Chris Keates)

National Children's Bureau (Keith Clements)

National Governors’ Association (Rani Kaur)

National Union of Teachers (Sarah Lyons)

Neonatal and Paediatric Pharmacists Group (Nppg) (Rowena McArtney)

Newcastle Bridges School (Margaret Dover)

Nisai Group (Fiona Cutherston)

noble, catriona (Clch)

Norman Croft Community School For Early Years and Primary Education (Marie Thomas)

North Yorkshire County Council (Caroline Barnes-Tee)

North Yorkshire Cyps (Jennifer Morgan)

Oldham, Sarah

Organisation for Sickle Cell Anaemia Research and Thalassaemia Support - Oscar Sandwell (Rachel McFee)

Oultram, Karen (Bridgewater NHS Trust)

Paediatric Continence - Bridgewater Community Health Trust (Sheena Kennedy)

Paediatric Continence Forum (Penny Dobson)

Paediatric Mental Health Association (Max Davie)

Paediatric Psychology Network

Parr, Frances (Barningham Cevc School)

Patrick, Alison (0-25 Service, Wiltshire, Council)

Payne , Kathryn

Pimblett, Gillian

Pinnington, Helen (Maricourt Catholic High School)

plymouth City Council (Jonathan Madeley)

Pollitt, Gillian (Lancashire Care Foundation Trust)

Primary and Community Care Pharmacy Network (Pccpn) (Melanie Dowden)

Priory School, Shrewsbury, The (Angela Dinnell-Heywood)

Rayleigh Primary School (Pete Malcom)

Reach Wokingham (Julie Monahan )

Reed, Sandra

reid, kim

Riley, Sarah

Robinson , Gemma (Parent)

Roche Diagnostics Limited (Angela Magny)

Rowlandson-Waite, Jayne (John Hanson Community School)

Royal Pharmaceutical Society (Heidi Wright)

Saffron Walden County High School (Hilary Goldsmith)

Salford City Council (Sue Woodgate)

School (Barbara Gavaghan)

Secondary school (J Ogunmyiwa)

Sense (Kate Fitch)

Setchfield, Kim

Sherwood, Zoe (Parent)

Smedley, Lisa (South Warwickshire NHS Foundation Trust)

Smith, J

Smith, Shirralee

Smith, Amahl

Somerset County Council (Roz Pither)

Southern Health NHS Foundation Trust (Jane Levers)

Spring Common School (Kim Taylor)

Stockport Metropolitan Council (Janice Cahill)

Stocks, Jemma

Stockton on Tees Borough Council (David Macdonald )

Surry, Carolyn

Sutton in craven community primary school (Fiona Beetles)

Teenage Cancer Trust (Caroline Brocklehurst)

Thackeray, Dawn

Together for Short Lives (James Cooper)

trowell, trudi

Twigg, Heather

UK Children with Diabetes Advocacy Group (jackie Jacombs)

Unison (Joanna Coates)

Unite / Cphva (Rosalind Godson)

Universal Child Health Services 5 Bouroughs Partnership (Jane Nurney)

Viral Hepatitis Service, Children’s Liver Centre (Sarah Tizzard)

Voice (Tricia Pritchard)

Wade, Tina

Wakefield, Nick

Wakefield local authority (Helen Ferguson )

Walker, Christine

Washington, Belinda

Watson, Lynne (Hounslow and Richmond Community Healthcare)

Webber , Janet

WellChild (Colin Dyer)

West Silc (Michelle Wilman)

West Sussex County Council (Hilary Thomas)

williamson, zara

wilson, irene (Plymouth Community Healthcare)

Woods, Beverley

Young Epilepsy (Emily White )

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Consultation on draft guidance for supporting pupils at school with medical conditions: summary of responses