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*OPSKYLU @V\UN 7LVWSL»Z (SSLYN` 5L[^VYR :JV[SHUK I would like cakes! CYANS Patient and Public Involvement Report December 2012

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*OPSKYLU° °@V\UN°7LVWSL»Z°(SSLYN`°5L[^VYR°:JV[SHUK

I would like cakes!CYANS Patient and Public Involvement Report December 2012

Introduction

Allergies currently affect an estimated 30% of children in Scotland, with allergic conditions including allergic rhinitis, allergic conjunctivitis, allergic asthma, atopic eczema, food allergies, allergies to latex, insect venom and drugs and anaphylaxis.

Allergic reactions can range from mild rashes and sneezing attacks, to distressing widespread hives and VNLQ�VZHOOLQJ��YRPLWLQJ��EUHDWKLQJ�GLIðFXOWLHV�DQG�LQ�WKH�most severe cases life-threatening anaphylaxis.

The Children’s and Young People’s Allergy Network Scotland (CYANS) was established in 2011 to improve allergy care for all children across Scotland – as locally as possible – and develop a dedicated service for young people to encourage an easy transition to adult services.

CYANS works through a partnership of children and young people, their families and friends, health care professionals and the voluntary sector.

Contents

Introduction ....................................................................................1

Process of involvement ...................................................................2

3GD�jMCHMFR ....................................................................................2

(LONQS@MBD�NE�@KKDQFX�@V@QDMDRR ................................................... 5

Schools ......................................................................................... 5

KKDQFX�GD@KSGB@QD .......................................................................... 6

Conclusion .....................................................................................7

Possible short term solutions included ........................................... 9

Allergies have an impact not only on the individual’s physical wellbeing, but also on the emotional and social relationships with family and friends, schooling and leisure activities.

1

Allergic Reactions

‘Last summer when I was at our caravan my arm starting blistering, it got worse and was all over my body, it was very sore and itchy, I didn’t like it, I had to go to hospital in an ambulance.’

‘I have cows milk and it feels scratchy (demonstration of itching) and I my neck is sore (demonstrates clutching throat DQG�PDNHV�QRLVHV�OLNH�KDYLQJ�GLIğFXOW\�breathing)’

‘I ate just one nut. A few minutes later I started to complain about a sore throat. Mum said “Have a drink,” but that didn’t help, it just made it sorer and at that point my lips started to go all puffy and got more and more puffy! We rushed to A&E which for us is just 2 minutes away. The hospital staff were great and gave me Piriton, but that didn’t help. Then they gave me steroids, that didn’t help and I was incredibly sick. So then things moved rather fast. My whole face had swollen up and you could hardly see my left eye. It was like a slit. I couldn’t speak, as my throat was so tight. I got an injection of adrenaline and that stopped things getting worse, but it took a couple of hours for the swelling to go away.’

Ł,�UHPHPEHU�KDYLQJ�P\�ğUVW�DOOHUJLF�reaction when I was about three, I was feeding nuts to the birds, I couldn’t breathe, my face went swollen and my lips went blue , I ended up in A&E.’

Feeling excluded or different!HQSGC@X�O@QSHDR��UHRHSHMF�EQHDMCR�ENQ�RKDDO�NUDQR�@MC�NSGDQ�RNBH@K�@BSHUHSHDR�HMUNKUHMF�ENNC�VDQD�GHFGKHFGSDC�@R�HRRTDR�VHSG�RNLD�BGHKCQDM�@MC�XNTMF�ODNOKD�RS@SHMF�SG@S�SGDX�VNTKC�@UNHC�SGD�RHST@SHNM��H D �MNS�FN�NTS�SN�O@QSHDR�NQ�FN�NTS�RNBH@KKX�VHSG�EQHDMCR�HE�SGDX�JMDV�ENNC�V@R�HMUNKUDC

Ł:KHQ�,�ZDV�\RXQJHU�,�IRXQG�LW�GLIğFXOW� to go to a friend’s house, birthday parties were a real problem. I began to realise that either I did not get invited as I was too much of a problem or my friends’ parents were so over protective and fussed over me so much it was an embarrassing and painful experience. Mostly I had to take my own food with me. So socially my life growing up was very restricted. People I think were scared to have me under their protection. I did feel left out and out of place many times …’

‘Friends freak out a lot about making me meals just in case they ’kill me’ as they put it, so I have personal experience of friends not inviting me on purpose to events or trips away with them just in case I eat something and they wont be able to cope.’

‘Birthday parties at a young age were annoying as I couldn’t go if there was balloons as my face would swell and I would end up in hospital, going to the doctors or dentist had to be planned as it had to be a latex free environment.’

‘Sometimes people don’t let me have something (to eat) when I know I can have it and that’s well…annoying.’

Process of involvement

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An essential part of this collaboration is the BGHKCQDM�@MC�XNTMF�ODNOKD�VHSG�@KKDQFHDR��@MC�SGD�@HL�HR�SN�ATHKC�@M�@KKDQFX�RDQUHBD�SG@S�HR�QDRONMRHUD�SN�SGDHQ�MDDCR�@MC�VHRGDR �"GHKCQDM��XNTMF�ODNOKD�@MC�SGDHQ�E@LHKHDR�VDQD�HMUHSDC�SN�BNMSQHATSD�HM�@�U@QHDSX�NE�V@XR�SN�@HQ�SGDHQ�UHDVR�NM�BTQQDMS�RDQUHBD�provision and their aspirations for future B@QD��SGQNTFG�O@QSHBHO@SHNM�HM�@�MTLADQ�NE�V@XR�HMBKTCHMF�SGD�"8 -2�K@TMBG�DUDMS�HM�&K@RFNV��?E@LHKX�C@XR��HM� ADQCDDM��&K@RFNV�@MC�$CHMATQFG�@MC�O@QDMS�@MC�toddler sessions in Aberdeen and Fife run

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Living with allergy

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Comments included;

‘I hate having allergies; I can’t eat some things I like and I can’t go near pets. I like pets’.

‘I wish I could eat the seedy bread.’

‘I have a big allergy to milk… I check with mummy what I can eat, then I eat it… but I would like cakes….’

‘I feel itchy and sick, I feel sad about it. I wish I didn’t have it.’

‘I feel itchy and sad and this is what my life is like all the time. I don’t like having allergies.’

‘Having to constantly check if products contain nuts, like at the supermarket. I can’t have a lot of nice foods.’

‘I always have to take a bag around with my Epipen (adrenaline autoinjector).’

‘I worry I will have these allergies forever.’

2 3

‘People to be more understanding about allergies.’

‘Not being allowed to eat nuts… if there was an area in the shop where there is food not containing the certain food, that would be easier. .. like the big supermarkets.’

‘Even in big shops (supermarkets) they stock foods that are good, then change the stock or ingredients and then you FDQłW�KDYH�LW�DQ\PRUH��RU�FDQłW�ğQG� it again.’

The effect of having allergies on the family

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‘If we didn’t have allergies in our house I would love to sit in the living room, ZDWFK�D�ğOP��HDW�SL]]D��,łG�DOVR�UHDOO\� like it if we could all have an ice cream when we went to the beach – that would be great.’

‘I feel worried for my brother if he eats something and I won’t know what it is and he maybe gets ill.’

‘I was scared, he was put in ambulance and I didn’t know what was happening.’

‘One day my little sister (aged 5) took the wrong piece of chocolate from the fridge (containing dairy). She started screaming because she knew the feeling of an allergic reaction and she was very frightened. Her lips were swollen, and

she was sick….the quick response SDUDPHGLF�FDPH�ğUVW�WKHQ�WKH�DPEXODQFH��she was unconscious, I was very frightened.’

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5@QHNTR�QDRONMRDR�RGNVDC�SG@S�SGDHQ�BGNHBD�NE�E@LHKX�@MC�RNBH@K�@BSHUHSX�HMBKTCHMF�GNKHC@X�@MC�QDRS@TQ@MS�BGNHBD�VDQD�BNMRHCDQ@AKX�KHLHSDC��QDRSQHBSHMF�RNBH@K�@BSHUHSHDR � �MTLADQ�NE�O@QDMSR�VDQD�@KRN�KHJDKX�SN�AD�SQNTAKDC�AX�SGDHQ�BGHKC�@SSDMCHMF�RBGNNK��B@LO��MTQRDQX��O@QSX�NQ�EQHDMCR�GNTRD�CTD�SN�ENNC�@KKDQFX

Parents also felt that the cost of suitable RS@OKD�ENNCR�ENQ�@M�@KKDQFX�EQHDMCKX�CHDS��V@R�DWODMRHUD�@MC�SGDQDENQD�QDRSQHBSDC�SGD�U@QHDSX�NE�ENNCR�SG@S�VNTKC�AD�FHUDM�SN�SGD�BGHKC

‘Free-from foods are expensive and FKRLFH�LV�OLPLWHG��LW�FDQ�EH�YHU\�GLIğFXOW�to afford foods for exclusion diets, they should be available on prescription or get an allowance to help.’

3GD�L@INQHSX�NE�O@QDMSR�CN�MNS�EDDK�SGDX�@QD�FDSSHMF�SGD�RTOONQS�SGDX�MDDC��GHFGKHFGSHMF�that there is so much information available @MC�HS�HR�CHEjBTKS�SN�JMNV�VGDQD�SN�@BBDRR�reliable consistent information.

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alternative names.

Importance of allergy awareness

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Schools

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q Information for school staff on the HLONQS@MBD�NE�DLDQFDMBX�LDCHB@SHNM�@MC�SQ@HMHMF

q Create a DVD that could be used in /2$�BK@RRDR

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Allergy healthcare

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q More dietetic input into the clinic time to reduce attendance at lots of appointments

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q Different doctor at each clinic appointment.

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q General Pediatrician in hospital ........���q General practitioner

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Conclusion

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The importance of this cannot be TMCDQDRSHL@SDC�@MC�HS�QDHMENQBDR�SGD�JDX�LDRR@FD�SG@S� allergies have an impact not only on the individual’s physical wellbeing, but also on the emotional

and social effect relationships with family and friends, schooling and leisure activities.

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q An appreciation of the effect that severe @KKDQFX�B@M�G@UD�NM�SGD�VGNKD�E@LHKX

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q Consistent care and improved BNLLTMHB@SHNMl�RDD�R@LD�BKHMHBH@M�NM�more than one occasion.

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q A database of competent health care professionals for GPs to contact for advice.

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‘There is a lack of knowledge in real life issues, e.g. diet and effect – beyond diagnosis and treatment.’

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Guidelines and referral pathways

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Possible short term solutions suggested

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8 9

CYANS Team

10&1�2IĺFH

Waverley Gate

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Edinburgh

EH1 3EG

Tel: 0131 465 5572

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Acknowledgements

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