[PCA]

SUPPORT GROUP
Welcome to the [PCA] Support Group Newsletter Issue 13, March 2012

newsletter

The PCA Support Group met on February 3rd in Wilkins Old Refectory, at UCL, Gower Street site. As per the agenda, Dr Jonathon Schott presented an update of the possibilities surrounding future treatments, followed by a question and answer session co-hosted with Dr Seb Crutch. After lunch, Mr Steve Lines , head teacher at Lindon Bennett School described the My Requests programme he had facilitated there, before drawing out comparable associations with the needs of our group. He assisted members of the group in small group workshops during which we began to work towards a similar set of principles for our group members. This work is ongoing, and you are warmly invited to contribute your thoughts or suggestions to jill@pdsg.org.uk [by the end of April 2012]. We welcomed several new members, attending for the first time, but were reminded just how difficult it can be to attend this group for the first time and in the initial stages post diagnosis. Perhaps this is something we ought to remain conscious of as a group, and work towards effectively incorporating .
Please let Jill know if you would prefer to receive this newsletter in a bold font format.

Carers only PCA Support Group Mtg

Fri May 25 2012
(RSVP to Jill Walton) 12-2.30pm sandwich lunch provided! Topic: Considering issues relating to end of life care VENUE: Seminar Room at the Dementia Research Centre, 8-11 Queen Square, London, WC1N 3BG. Nearest underground stations are Holborn or Russell Square. See page 10 for a map and directions.

PCA Support Group Mtg

Friday June 22 2012
(RSVP to Jill Walton) VENUE: Wilkins Old Refectory, University College London, Gower Street, London WC1E 6BT 11am - 2pm (half hour coffee break/ snack lunch included) Speakers: Dr Seb Crutch : Research into PCA: what are we finding and what questions should we asking Music workshop to be provided Tea and coffee will be available upon arrival, from 10-30am Please confirm your attendance: Jill Walton 07592 540555 or email jill@pdsg.org.uk Map and directions provided in this newsletter

Myrtle Ellis Fund

The PCA Support Group is generously supported by the Myrtle Ellis Fund, as part of the National Brain Appeal (Charity number 290173). For more information on the work of the Fund or to make your own contribution to the running costs of the PCA Support Group, please contact the Foundation on 020 3448 4724.

directions

Directions for meeting on 22nd June 2012

Wilkins Old Refectory, University College London, Gower Street, London WC1E 6BT

Underground
The closest underground stations to UCL are Euston Square on the Circle, Metropolitan and Hammersmith and City Lines, Goodge Street on the Northern Line and Warren Street on the Northern and Victoria Lines. London Underground Infoline: 020 7222 1234.

British Rail
London has many mainline rail stations. Most of these are a short journey away from UCL, with the stations at Euston, Kings Cross and St Pancras being within easy walking distance. British Rail Infoline: 0845 748 4950.

Buses
UCLs Gower Street site is served by many Transport for London bus routes. Buses travelling from north to south stop in Gower Street, immediately outside UCLs main gate, while those travelling from south to north stop outside Warren Street station, about five minutes walk from UCL. Services to these stops include route numbers: 10, 14, 24, 29, 73, 134, 390. London Buses Infoline: 020 7222 1234

Parking
UCL Helpline 020 7974 4651 or 020 7974 4655 (Staffed Monday -Friday 9.00 am to 5.00pm) We are very conscious that travelling to and around London can seem a daunting prospect. Please see the advice regarding travelling on London underground, later in this newsletter, and also contained in the minutes. Be aware that pre booked travel is generally cheaper than tickets purchased on the day, and that the MEF does extend its remit to assistance with travel costs where required.

contributions

Your contributions
Members of the PCA Support Group have the on-going opportunity to contribute to the newsletter, and thereby ask questions, share experiences, helpful hints, or stories which may benefit the wider group. Updates on issues relating to raising awareness of PCA or other local initiatives which members are aware of could also be of interest. Published pieces could range from snippet one liners to more detailed commentaries.whatever feels most appropriate!

Show and Tell

It was suggested that people bring the gadgets they have found helpful in managing PCA to a future meeting, for a sort of show and tell session, or equivalent. I put this to you now, in order that when asked for a future meeting, you might have things in mind!

Flights with a partially sighted person

Nowadays one has to pay for any airline assistance unless you are in a wheelchair or are partially sighted. The best strategy for patients flying anywhere is to register as partially sighted (with the RNIB) and so qualify for free assistance. Despite not being officially registered, BA believed us and staff were enormously helpful.

Apple i phone
.the Siri i phone has been a tremendous find for us One particular member of our support group, having been cut off from his family and environment because he could no longer use the phone, reconnected with his Universe simply by using Siri software on the iPhone. He doesnt have to rely on knowing what the number is or even where the buttons are - he simply speaks into the phone, asking it to review before instructing it to send. The phone allows you to use your voice to send messages, schedule meetings, place phone calls, and more. But Siri isnt like traditional voice recognition software that requires you to remember keywords and speak specific commands. Siri understands your natural speech, and it asks you questions if it needs more information to complete a task. Diane Garfield is currently liaising with one of the i phone suppliers in respect of testing the Siri software over the next few months. Follow this link for more information: http://www.apple.com/iphone/features/sirifaq.html.

Filtered glasses
One thing I wanted to share with others was our incidental finding out about filtered glasses. These are overglasses costing only about 20 per pair that look a bit like ski glasses. In my wifes case she uses a lemon coloured pair that takes out all the blue spectrum of light. These have been the only step forward in her 5 year history of diagnosis, but were a major find from some half a dozen pairs that a support worker thought we might like to try. The only pair with a filter as opposed to the others which were all tinted and had an immediate effect. She then travelled much better, particularly in the car and was able to watch some television. The glasses have to be filtered rather than tinted as for normal sunglasses and there are several other strengths, colours and spectrum colour eliminators available. Her particular glasses were 70% Yellow Spectra Shield Plus. They were supplied at a cost of 20.89.

contributions cont

Activities for people with PCA

have heard it said many times during our support group meetings, that the days can be a long time to try and fill with meaningful activity for a person with PCA. In response to an enquiry asking for suggestions, we gave the following response: 1] the RNIB website has some interesting gadgets and art/craft/game ideas in their shop, which can be accessed via www.rnib.org.uk 2] various assistive technologies for people with dementia are described at http://www. atdementia.org.uk/ 3] Pictures to share are a series of books, with large print photographs which can be useful triggers for conversation. I think that there are 12 books in the series, and the ISBN no. for the one about pets is 978 0 955 3940 89. Available from the Alzheimers Society shop. 4] one of our support group members has started a Facebook page called Posterior Cortical Atrophy which people can request to join. You may be able to generate a live discussion and glean ideas via that means. Additionally, Memory people is a group which was founded by a gentleman who himself was diagnosed with early onset Alzheimers disease. It can be accessed from a facebook account by typing Memory People into the search bar of the home page. 5] Music and music therapy options might be explored. Maybe Guideposts Trust Music Therapy might be able to advise? Or Alzheimers Society Singing for the Brain may have a local group available. Please can you let me have any ideas or suggestions which have worked for you? I will of course forward them to the gentleman in question, and also ensure that they are shared in the next newsletter!

London Underground
Did you know that you can ring London Underground Customer Services on 0845 330 9880, the day before you are due to use a service, and they will arrange for someone to meet you in the entrance area of the station at which your journey begins. They will accompany you down to the platform and onto your train and then radio ahead, to an official at the station you next need to use who will assist with any platform changes you require, before radioing on again, to alert a member of staff at the station of your destination, who will assist you from the station up to ground level.

PCA Identity Cards

In previous meetings and discussions, we agreed that it would be useful for people with PCA, and their carers, to be able to carry a small card which would alert others to the fact that there may a need for increased understanding, attention or patience. We are delighted to be able to tell you that these cards are now available! Please contact jill@pdsg.org.uk or telephone me on 07592 540555 if you would like one! We will be including them in with all new member welcome and information packs from now on! I will also bring a supply to forthcoming meetings.

My name is I have an illness and need help with l Other medica conditions Allergies

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Evening tel.

Please send articles/responses for inclusion in future newsletters to Jill Walton, 22 Brushwood Drive, Chorleywood, Herts, WD3 5RT or email them to jill@pdsg.org

trophy this affects m y vision and th inking I would apprec Doctor iate your help please read th is card for mor e information on how to help thank you
Posterior cortic al atrophy [ PC A] is a progress condition which ive affects the back of the brain. It most common is ly cause

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news & stories

Good Samaritans are everywhere?

Mr Ken Cox and his wife Ann are members of the PCA support group. Ken has kindly supplied this account in response to Peter Ledgers touching description of the kindness he and his wife have encountered since a diagnosis of PCA.
It was almost a relief for our family, my wife Ann and me when she was diagnosed with PCA in January 2006. At last we knew the course of Anns difficulties, which began about four years earlier, a few years after she retired as a Headmistress in 1994. We lived in Edenbridge, a small country town in Kent, and Ann was a keen member of the local group of the National Womens Register. They met in members homes every fortnight and planned their own programme every year. Their visits to the theatre or cinema were followed by discussion and critiques; they discussed topical issues, books, poetry etc. They organised outings, had meals in local restaurants etc. a lively, friendly group of ladies. By 2003 Ann was finding it increasingly difficult to play an active part in their meetings and decided to leave. However, members encouraged her to stay and several of them started to invite Ann to join them on outings eg: visiting garden centres, National Trust properties, lunchtime concerts, shopping, swimming etc. These offers of help soon developed into a regular monthly rota and it is continuing in 2012!! Ann still enjoys the meetings and especially and company and friendship of the outings. Members tell me that they enjoy these outings too. These breaks give me some free time, which I greatly appreciate as a welcome interlude in my 24/7 role as a carer. The love and support we both feel is a great stimulus for Ann and gives me renewed strength. The ladies are truly Good Samaritans. Could the love shown by these Good Samaritans also be found where you live? Do you have neighbours who might be interested in an occasional visit to a local pub or restaurant? Would they enjoy a visit to a garden centre or a day out to a place of interest? Perhaps you belong to a group Probus/W.I./dancing/Whist, gardening or allotment club, Rotary? I hope you find that Good Samaritans are everywhere! I guess you know a few already. Ken Cox

A personal care account

Many of you will know Catita Lumley and her family, as longstanding members of this support group. It was with a mixture of sadness and relief, that her cousin, Martina Wise, informed us that Catita had died on Thursday Jan 26, 2012, aged 67.
Martina was keen to share some of the things they had learned along Catitas journey from diagnosis onwards, and we share them here, in the hope that by their reading, others may feel in some way, less isolated. From the earliest stages of accepting the diagnosis and all that it would inevitably entail, Elizabeth Kubler Ross published work around loss, bereavement and grief was a source of great help and understanding. On Death and Dying is her most famous book, but much helpful information can be accessed via her website: www.ekrfoundation.org Establishing a Lasting Power of Attorney, and the drawing up of Living Will were two practical provisions which very much impacted and eased some of the decisions around Catitas care needs. The Liverpool Care Pathway was particularly inspirational in assisting the family in their thinking around end of life decisions. Details of this pathway are available at www.mcpcil.org. uk/liverpool-care-pathway (continued overleaf)

news and stories cont

With regards to some of the more practical aspects of caring for Catita, Martina was keen to share the following: Take spare clothes, a damp flannel, and plastic bag for disposing of any soiled garments, whenever you go out Plastic adhesive window coverings, available at B and Q, or similar hardware outlets were helpful for covering windows, which were triggering visual disturbance if left uncovered, and where curtains did not help. Acknowledge the need to ask for help. And remember that anyone who stops is usually prepared to help! Martina found the Alzheimer Society Talking Point forum a useful point of contact. A sensor, between the threshold of the bedroom and landing, and possibly at the front door too, with an alarm monitor, allowed for the carer to rest/sleep knowing that the alarm would sound in response to significant activity. Stress balls were a useful and possibly therapeutic thing for Catita to handle. A very soft cushion or teddy bear was used a lot, when she wanted to hold and squeeze objects. Involve younger family members from the outset both in explanations regarding the way in which a relative is unwell, and in ways of being able to help. Taking the dog for a walk, or collecting the paper are ways in which children can be empowered to feel in some way useful and able to offer support. Always and Forever, written by Alan Durant was the book they found most helpful in explaining to children and grandchildren the pathway they needed to be prepared for. Even when words were difficult to find, Catita could sing or hum in tune, and so music had an important part in her care provision. Distinctive food smells seemed to be a good way of lightening difficult moods, or averting challenging behaviour. During the day this could be the actual cooking of food, but even at night time, thyme, rosemary or garlic seemed to produce a positive effect. Use Velcro-ed on buttons, purely for decorative purpose, and which can be played with and removed without consequence.

In the later stages of care management: Oral care was best provided via a flannel glove. The carer placed toothpaste on a finger and rubbed rather than brushed teeth. Holding the chin down slightly, between thumb and forefinger sometimes helped in keeping the mouth open for long enough for oral care to be achieved. Swabs on long handle sticks were useful for mouth care. Keep skin well hydrated, and protected where necessary with Sudocrem. Evian facial aerosols were a gentle way of refreshing. Beanbag neck supports provided a comfortable support to head and neck, as did the carer gently taking the weight of Caritas head, or using head massage as a therapeutic tool. Knee separators for use in the bed became particularly important for pressure relief and comfort. Although an electric pressure relieving bed was a great asset, problems did arise if ever there was a cut to the power supply. Martina suggests keeping a blow up airbed, deflated, under the mattress, which can be manually inflated if power is going to be lost for any significant period of time. Fresh pillowcases are a lovely way of making the bed feel clean. When Catita was no longer able to eat, the carer pureed normal food, and used a 50ml syringe to squirt liquid into the space between Catitas teeth and cheek. Gentle stroking seemed to help her swallow. Catita had asked not to be PEG or naso gastrically fed. Bath towels rolled to help maintain position in the bed were a softer alternative to some of the other aids provided for this purpose. Whilst stimulation has its place, remember the value of silence. Simply sitting and reading in the same room is sometimes enough. The PCA Support Group did make reference to Catita at their meeting on Friday February 3rd, which co-incided with the day of her funeral. We of course send our condolences and kind regards to Mr Lumley, Martina and the wider family.

more news

This is Me leaflet launched

Alzheimers Society has launched a leaflet called This is me for people with dementia who are going into hospital.
This is me is a simple and practical tool that someone going into hospital can give to staff to help them understand the condition. It provides a snapshot of the person with dementia, giving information about them as an individual, such as needs, preferences, likes, dislikes and interests. This should enable staff to treat each person as an individual, thereby reducing distress for them and their carers and helping to prevent issues such as malnutrition and dehydration. The Royal College of Nursing is supporting the This is Me initiative. The leaflet can be downloaded via alzheimers.org.uk or ordered by telephoning 01628 529240

Message in a Bottle
In a recent meeting, the concerns around conveying emergency information in a crisis were discussed, and members of the group may be interested to know about this scheme. The Lions Message in a Bottle scheme is a simple idea designed to encourage people to keep their personal and medical details on a standard form and in a common location - the Fridge. Whilst it is focused on the more vulnerable people in our community, anyone can have an accident at home, so this scheme can benefit anyone. Message in a Bottle is an initiative that very many Lions Clubs across the country have taken to and recognise as a means of fulfilling their motto We Serve, often funding the scheme from their own charity accounts. This scheme is free to the user. As a minimum it will save the Emergency Services valuable time identifying you and your emergency contacts. By telling whether you have special medication or allergies or not, it is a potential lifesaver and provides peace of mind to users and their friends and families. Bottles, which are free of charge, can usually be found in your local Chemist or Doctors Surgeries. Thanks to a number of other organisations, you may also find that you can obtain one through your nearest Neighbourhood Watch group, Age Concern, Council Offices, Housing Associations and many other places including Police stations. If you are unable

to find a Bottle, please contact your local Lions Club. If you have any difficulties in finding your nearest Club, or would like to know more about this scheme, please E-mail: mdhq@lions.org.uk miab@lions.org.uk or telephone 0121 441 4544. Dementia Awareness Week 2012 This years Dementia Awareness Week will take place between 20 and 26 May. The aim of the week is to increase public awareness and understanding of dementia and get people thinking and talking about it. The PCA Support group will be represented in the main UCL Hospital in Euston Road on May 24th. You may be involved in local awareness activities, and if you require copies of the new PCA Support Group flier for your event, please let me know!

regional meeting

Worthing PCA Support Group Meeting

As you know, our support group meetings to date have all been held in London. Getting to London for a meeting is not always ideal, and in some cases, prohibitive for people.
We do have the vision to facilitate local regional meetings, to take place independently of the London meetings in areas where groups of 2, 3 or more members want to come together. We are therefore delighted to inform you about a regional support group meeting that we are trialling in Worthing, on April 20 2012. The meeting will take place from 12noon2.30pm, at: 27 Stone lane, Worthing, BN13 2BA I am informed that the venue is located in a residential area so there are no issues about parking charges or spaces, but please avoid blocking the entrance of drives of local residents! The meeting will begin with light lunchtime refreshments as people arrive, hopefully allowing introductory informal exchanges to take place. After lunch, we will spend some time explaining the rationale behind the establishment of local support group networks, and discussing the objectives, format and remit that this group might want to take on. We very much hope that other regional groups will begin to develop in the near future and would be delighted if you were able to join us in Worthing on April 20th. Please dont hesitate to get in touch if you have any questions, to express an interest in coordinating a local group, or indeed to confirm your attendance at this one!

Checklist

This checklist will remain a feature in forthcoming newsletters, and can be added to as appropriate. It is a brief reminder and pointer to those services which may be of benefit for people with PCA

Assessment of need: for

patient and carer. Request one via your GP or directly via your local social service dept.: [Disability Living Allowance/Attendance Allowance/Council Tax Reduction]

Blue badge parking permit

RNIB: Support and advice for

people with sight loss. Tel 0303 123 9999 E-mail helpline @rnib.org.uk

Medic Alert or other

identification networks

Lasting Power of Attorney:

Disabled Living Sites: which needs to be established as soon as sell products designed to make possible. daily living activities easier to manage .Of particular note is The Admiral Nurse Service: information and support for family Knork is a fork with wide, rounded and bevelled outer tines that will carers, people with dementia and safely cut food like a knife, without professionals. Available locally in a sharp edge to cut the mouth some areas for practical support, of the user. but helpline open to all. Tel:
0845 257 9406 or email direct@ dementiauk.org

RADAR keys: National

key scheme for toilets for disabled people. E-mail: radar@radar.org.uk Tel: 0207 250 3222

map for queens square

Carers only PCA meeting; Fri May 25 2012 12-2.30pm sandwich lunch provided

Seminar Room at the Dementia Research Centre, 8-11 Queen Square, London, WC1N 3BG. The nearest tube station is Russell Square. The nearest mainline stations are Euston, Kings Cross and St. Pancras.

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minutes from last meeting

Minutes of PCA Support Group Meeting, 3rd February 2012 at University College London: Wilkins Old Refectory
Dr Jonathan Schott, from the Dementia Research Centre, Institute of Neurology New Trends in Research and Steve Line, Head Teacher of Lindon Bennett special School My Requests
Venue: We would like to express our thanks to U.C.L. for allowing us to use this beautiful venue. It is perfect for our members, with easy access from street level. With its own set of selfcontained WCs and cloak room, it provides a comfortable and secure environment. There is easy access from public transport. There are small flights of stairs from all nearby Tube stations up to street level, however, but there are lifts and escalators for most of the way up from the track. Essential car users should contact UCL, if we use the venue again: there is a small car park and the university may be able to help if there is advance notice. 1. Attendees: 36 members attended with 9 NHNN staff and speakers. Seb welcomed a number of new members from Aldershot, Bayswater, Devon, Diss, Hackney and Pratts Bottom. We hope you felt comfortable with us and look forward to meeting you again at future meetings. 2. News of Members: After this welcome, Seb continued his opening remarks with news of other members. Sadly, we learned of the death of Katita Lumley, who died the previous week. We extend our warmest regards and sympathy to her family during this time of bereavement. 2.1. After a lot of hard work from Jill and active support from local members, we are happy to announce that our first regional pilot meeting will take place in Worthing on Friday April 20th. We wish them every success: more details to come in the News Letter. 2.3 Riitta Kukustenvehmas will be leaving the NHNN in May to facilitate a move to Montreal. Her talented work has been much appreciated by all our members and we would like to express our thanks to her and very good wishes for the future when the move comes. 3 . The Programme. Dr Jonathan Schott New Trends in Research 3.1 Overview. The greatest wish of all new patients is to get treatment. Their greatest need is to understand that the disease is progressive and incurable and that the ongoing maintenance of a healthy lifestyle is vital: Eating a good diet, not smoking, watching blood pressure etc. We cannot yet stop progression: but this is our aim. 3.2 Good medication needs to work for close on 100% of patients without side effects. It must be cost effective. 3.3 PCA is a syndrome brought on by Alzheimers Disease. We suspect there will be a genetic component in some cases, but this is as yet unproven. 3.4 We suspect that it is caused by particular triggers or events, so research is aimed at establishing what triggers the build up of proteins which are present in patients brains and how this can be prevented. 3.5 It is much easier to treat a disease in its early stages. We aim to stop abnormal proteins from accumulating, to clear the abnormal ones , to stop inflammation and stop pathology. current treatment involves Acetylcholinesterase inhibitors Doneprezil, Rivastigime, Galantamine and Memantine. 4.1 Drug Development. Drugs need to penetrate a complex organ and their development in all medical areas follows an established route: for Alzheimers, in general. the stages are: Pre-clinical study of chemical blockers Animal studies for safety tests Tests in healthy volunteers Trials in small numbers of patients Large multi-centre trials Licensing On-going monitoring. The cost of this process is 1 Billion US Dollars.

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minutes cont

4.2 The Challenges for PCA . Not all sufferers have Alzheimers disease (although most do). We urgently need better diagnostic techniques. 4.3 Pathways to the development of PCA may not be the same as those for typical Alzheimers. We need laboratory research followed by blood tests to establish susceptibility to the disease. There are no uniform diagnostic criteria and hence an urgent need to harmonise these across centres. Dr Seb Crutch is currently organising an international meeting to harmonise treatment and diagnostic methods. 4.4 PCA is difficult to detect early. We need better scanning tools: better education of GPs and Opticians: more popular awareness raising, la Terry Pratchett: and more academic awareness raising. 5.1 Questions from the Floor: Aricept is not an ideal medicine: What does it do? Brain cells die during the disease: Aricept boosts the levels of the neurotransmitter acetylcholine and the sufferers alertness increases. It is rather like the postman who helps to deliver messages and hence there is a gain in selfconfidence and a rise in the MMS. However the effects can be nebulous, not as precise as in the trials. The drug works for a number of years but we cannot yet predict the various stages as accurately as we need to. Patients however notice a difference with the drug and can experience a downturn if it is missing for as little as 2 days. 5.2 Patients are concerned at why a drug may be unsuitable for them and are often frightened of giving up the drug temporarily when results are unclear, in case they cannot get back on to it again. 5.3 MMSE (the mini mental state examination/ test) is supposed to be an indicator, but there is still a need to listen to patients in addition. 5.4 The progression of the disease is difficult to assess we still need more experience of the early and late stages of the disease. Aricept can become ineffective when the patient falls off the MMS scale. 5.6 However non-verbal clues are important in the later stages pointing to the need for a

pragmatic approach. 5.7 There is a psychological down turn if the drug is removed. However, when it does become ineffective, Doctors are not allowed to prescribe a placebo. 5.8 Factors concerning environmental issues are at present largely unknown. There are no data bases as yet to chart gene defects which may be common to cancer/neuro degeneration/ heart problems etc. 5.9 Genetic factors are not linear. The progress of genetic mapping for PCA attempts to distinguish between genes causing disease and the predisposition to disease. As with research into risk genes that predispose patients to succumb to Alzheimers, research is in the very early stages. There is still a need for research into the donated brains of sufferers children (following death). 5.10 Are pills the best method of delivery of drugs? There is a risk of infection with injections. Pills are cheap, practicable and readily available. Research into other methods such as gene therapies and various infusions are simply not currently researched.

Lunch break
Steve Line My requests - and how the project was set up. The Lindon Bennett school is a primary school for pupils with multi handicaps and severe learning difficulties which include both physical and mental disabilities. My requests was a project involving, pupils, teachers, parents and carers, support staff of all kinds associated with the school, to write easily understood guidelines for how the children wanted to be treated by those caring for them. The poster they produced has been circulated with the news letter. Steve stayed with us, as we started work on brainstorming the needs of PCA sufferers and their carers when hospital treatment is needed for other conditions. 6.1 12 years ago the staff at Lindon Bennett were unsatisfied with the established protocols and regulations for the treatment of children with disabilities. Golden rules such as You will, You must not seemed irrelevant. They

12

minutes cont

wanted positive guidelines, requests that were born of the childrens own perceptions of their needs and those of parents/carers (of all kinds) and which would positively engage them in their treatment. 6.2 They began with a brainstorming activity within each of the groups involved. Children, Parents, teachers, therapists and so on right down to the school bus drivers collecting the children each night formed such groups. 6.3 Following this, themes emerged, which later became the requests on the poster. Steves talk concerned the development of these. 6.4 Give me the dignity and respect I deserve Always give me time to respond Take longer to process information, instructions and requests. Take time to complete an activity with me. 6.5 Remember I like to make choices This concerned a raising of the awareness of individual childrens needs. An awareness of choice as part of learning and the maintaining of independence. 6.6 Keep me safe Children have many fears of what might happen to them. 6.7 Tell me what is happening next How can you help the totally dependent? Tell them the process of what is happening, as it happens. 6.8 Stay calm The importance of staying calm and positive, even when behaviour is upsetting and challenging. It is vitally important to the person concerned- even if they dont look as if they are aware they have difficulty. Look behind and beneath the exterior. 6.9 Let me communicate for myself Look at non verbal communications. Dont finish sentences for them. Let your approach be consistent. 6.10 Talk with me, not about me Never talk over children/patients. 6.11 Take time to understand and hence to build confidence and self-worth. Never assume that what you say is how a child/ patient feels. 6.13 Please, dont judge me This refers to social discrimination of all kinds, e.g. whether gender or race based.

6.14 Dont get overwhelmed by difficulties. 7.1 Setting up your own requests. Be aware of who you are, when publishing requests. 7.2 Who is in your group? Are you including those who cant speak and cant sign? Be aware of different abilities and ages. Who are the requests for and to whom? 7.3 Identify needs. Communication, safety the need to allow choice. 7.4 Who should honour your requests? Professionals who have responsibility for you? The general public? Have contact numbers for them. 7.5 Why do you want to publish in the first place? Is it for a better way of working together? Is it to achieve mutual respect? Dont assume that everyone knows who you are. Is it to encourage others to give support? Or is it to gain recognition? We owe a special vote of thanks to Steve, who came in spite of needing to recover after an accident. He stayed with us as we started the brainstorm, aware that some members would already be tired by the first session and would need to make their way home. For this reason our brainstorm is being written up separately to allow for e-mails and other contacts to come in. Please send any contributions you would like to make to jill@pdsg.org.uk by the end of April.

Celia Heath February 2012.

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