Trustees Annual Report and Receipts and Payments Accounts

Trustees Annual Report and Receipts and Payments Accounts for the year ended 31 March 2014

Governing Document                                                 

The Scottish Association for Sleep Apnoea is an Unincorporated Association governed by its Constitution. This Constitution was revised and adopted by the Association at its AGM on 29 September 2012 and further amended at the AGM on 21 September 2013, with all the changes having received the consent of OSCR.

Recruitment and Appointment of Trustees

Officers are appointed or reappointed by members at the Annual General Meeting and may serve for up to three years and are eligible for re-election. Local Group Delegates are elected annually by their respective Local Groups and are eligible for re-election.

In addition the Management Committee has the power to co-opt additional members with specific expertise, relevant to the work of the Committee and the Association, but such co-opted members have no voting rights and are not Trustees.

Trustees from 1 April 2013 until the date of approval of this Report

Michael Wilson                      Chairperson; Newsletter Editor (to 21/9/13)

Raymond L Walker                Secretary (to 21/9/13); Fife Local Group Delegate

Lesley Bagnall                        )Joint Secretaries    Tayside Local Group Delegate

Tom Irvine                              )   (from 21/9/13)    Ayrshire, Dumfries & Galloway Group Delegate

R Scott Elliot                          Treasurer; and Vice-Chairperson pro-tem

John Paul                                Membership Secretary (to 21/9/13)   

Helen Rowson                        Membership Secretary (from 21/9/13); North Local Group Delegate

Murray Phillips                      Newsletter Editor (from 21/9/13)

Mark Lincoln                         Website Consultant

Local Group Delegates  -Edward Barker (Borders – resigned 21/9/13); David and Christina France (Lothian); Tom Davidson-Kelly (Glasgow – ceased 21/9/13)); Jim Lennon (Inverclyde)

No other Trustees have served since 1 April 2013.

Contact address

66 Princes Street, HAWICK TD9 7EE (Home address of the Treasurer)

Web site      http://www.scottishsleepapnoea.co.uk

Charitable Purposes

The purposes of SASA as recorded in our current Constitution are –

the advancement of education regarding Sleep Apnoea with a view to raising public awareness of the condition

the promotion of scientific research into Sleep Apnoea and the subsequent dissemination of the results of such research undertaken

the provision of support to sufferers of Sleep Apnoea and their families

Activities/                                                      

1                     

Activities and achievements

The Association is closely associated with Sleep Study Centres in Scotland. However due to necessary adherence to patient confidentiality we only become aware of those patients who choose to disclose their names to the Association. This can be a major obstacle to informing newly diagnosed sufferers of the Association and its objectives, but the matter is kept under review.

144 Members (both single, and joint with partner) paid membership fees in the year. This is an increase of 21 from the previous year. Members who have not paid their 2013/14 fee are being contacted in 2014/15 to enquire if they wish to continue membership. In some cases non payment appears to be due to problems with Bank Standing Orders.   

The Management Committee continued to meet during the year with all meetings held in Edinburgh.

Meetings and contacts have restarted in some of the Local Groups but with a wide disparity in the level of activity.

The Conference and Annual General Meeting was held on 21 September 2013 at West Park Conference Centre, Dundee. 36 members and partners registered and were present. Sponsorship donations were received from two equipment manufacturers who were present – Philips Electronics UK Limited and Intus Healthcare – and both had product information tables. The various guest speakers presented helpful information on sleep apnoea and the various treatments, facilities, equipment and research being carried out throughout the country.

The website containing both general information on sleep apnoea and with specific information for members and with links to our equivalent Organisation in England and Wales SATA (Sleep Apnoea Trust Association), is being revamped and brought up to date.

This link with SATA is providing benefits to our members through the sharing of information and use of SATA Information Sheets. Two members attended the 2013 SATA Conference.

SASA has been represented at various other Conferences during the year including the British Lung Foundation and Scottish Sleep Forum.

Trustee remuneration and expenses

The trustees did not receive any remuneration during the year. Five members received travel and other expenses totalling £708, mainly for attending meetings of the Management Committee (last year eight members £1,433)

Financial position and Reserves.

The funds of the Borders Branch are held with the rest of the Association’s funds, but in a Restricted Fund for their use only. The only change in these funds has been the addition of bank interest

The Trustees declare that they have approved the Trustees’ Report above and also the Accounts on page 4.       Signed on behalf of the Charity’s Trustees

R Scott Elliot, Vice-Chairperson/Treasurer                          21 May 2014

 

21 May 2014 R Scott Elliot Treasurer

                          *******************************************************

 

               SCOTTISH ASSOCIATION FOR SLEEP APNOEA
                         Scottish Charity Number SC023352
       Receipts and Payments Account for year ended 31 March 2015
                                        Unrestricted        Restrictedd    Total       Total
       Funds      Funds    2014/15 2013/14
RECEIPTS          £            £            £            £
Members’ Subscriptions/Donations 1,693 1,693 2,193
Other Donations 0 0 190
Gift Aid – Tax refunded 508 508 209
Conference/AGM – Fees 555 555 567
                       Sponsorship donations 450 450 300
                       Fund Raising – Raffle 123 123 82
Bank Interest 397 78 475 544
3,726 78 3,804 4,085
PAYMENTS-for charitable activities
Conference/AGM – 2014-Venue costs 1,082 1,082 1,845
                               Speakers expenses 225 225 49
                               Other 33 33 200
Venues for Meetings 157 157 99
Web site 65 65 145
Awareness – Subscriptions 105 105 105
                     Roller Banner purchase 0 0 119
Research Grant 1,000 1,000 0
Travel to Meetings/Conferences 201 201 708
Printing/Stationery 465 465 317
Postages/Telephone 390 390 151
Equipment – Voice meeting recorder 139 139 0
Insurances 435 435 434
Local Group – Tayside 0 0 80
Other 0 0 4
4,297 0 4,297 4,256
(DEFICIT)/SURPLUS FOR YEAR (571) 78 (493) (171)
STATEMENT OF FUNDS AS AT 31 MARCH 2015
Balances brought forward 27,529 5,939 33,468 33,639
(Deficit)/Surplus for the year (571) 78 (493) (171)
Balances carried forward 26,958 6,017 32,975 33,468
Represented by the following assets
Royal Bank of Scotland 896 37 933 926
Virgin Charity 100 days Notice Account 22,000 5,980 27,980 0
Virgin Money Charity Deposit Account 4,035 0 4,035 32,542
Clydesdale Bank 27 0 27 0
26,958 6,017 32,975 33,468
Assets – Gift Aid/GASDS – Tax due xxx 0 509
Liabilities- Edinburgh RI -database 2,000 2,000 2,000
Raigmore Inverness-3 PAP devices 810 810 0
NOTE – Restricted Funds belong to the Borders Branch.
12 May 2015 R Scott Elliot Treasurer

With a deficit on the year of £273, the unrestricted funds have decreased to £27,528. The Association continues to look for new opportunities to fund projects and studies in the furtherance of its Objects. One such project is to set up a patient database by the Edinburgh Royal Infirmary and SASA has pledged a sum of £2,000, to be paid over when all other funding is in place.

                                                           *******************************************************

Independent Examiner’s Report to the Trustees of Scottish Association for Sleep Apnoea

Scottish Charity Number SC023352

I report on the accounts of the charity for the year ended 31 March 2014 as set out on page 4.

Respective responsibilities of Trustees and Examiner

The charity’s trustees are responsible for the preparation of the accounts in accordance with the terms of the Charities and Trustee Investment (Scotland) Act 2005 and the Charities Accounts (Scotland) Regulations 2006. The charity trustees consider that the audit requirement of Regulation 10(1) d of the Accounts Regulations does not apply. It is my responsibility to examine the accounts as required under Section 44(1) (c)  of the Act and to state whether particular matters have come to my attention.

Basis of Independent Examiner’s Statement

My examination is carried out in accordance with Regulation 11 of the Charities Accounts (Scotland) Regulations 2006. An examination includes a review of the accounting records kept by the charity and a comparison of the accounts presented with these records. It also includes consideration of any unusual items or disclosures in the accounts, and seeks explanations from the trustees concerning such matters. The procedures undertaken do not provide all the evidence that would be required in an audit, and consequently I do not express an audit opinion on the accounts.

Independent Examiner’s Statement  

In the course of my examination, no matter has come to my attention

1.   which gives me reasonable cause to believe that in any material respects the requirements:

  • to keep accounting records in accordance with Section 44(1) a of the 2005 Act and Regulation 4 of the 2006 Accounts Regulations,   and
  • to prepare accounts which accord with the accounting records and comply with

            Regulation 9 of  of the 2006 Accounts Regulations

have not been met,    or

2.   to which, in my opinion, attention should be drawn in order to enable a proper understanding of the accounts to be reached.

Signed                                                                                  Date    23 June 2014

Name          John I Campbell  FCCA

                                                                            ******************************************************

SASA at Long Term Conditions event.

There was an LTC event, hosted by Angus Council,  which was held at the Reid Hall in Forfar on the 20th May 2015. Lesley manned a SASA stand for the day, joined by Kathy later in the day. Information, leaflets etc were given to interested parties who came to the stand. Lesley also took part in a Hooping demonstration!  Unfortunately I missed the photo opportunity! A busy but successful day!

IMG_0096          IMG_0097

Pictures above show some of the info on the stand and  Lesley Bagnall, SASA Tayside Secretary.

Tayside local meeting. April 2015

There will be a Tayside SASA local meeting on Tuesday 28th April 2015.

It will be held at Kingsway East Fire Station from 1.30-3-30pm.

Come and have a chat about any problems you may have with OSA, masks etc then enjoy a cup of tea!

We look forward to seeing you there.

UPDATE

The above meeting took place as arranged and members discussed various topics.

The  Firestation Master took everyone on a tour of the station and also explained how we could utilise the IT equipment within the station and also gave us lots of other information regarding use of other Fire Stations for future meetings.

Sleep-disordered breathing & Downs Syndrome

Sleep-disordered breathing and Down syndrome: what you need to know Lizzie Hill BSc(Hons) RPSGT EST PhD Research Student, Sleep Research Unit, The University of Edinburgh Specialist Respiratory Clinical Physiologist, Royal Hospital For Sick Children, Edinburgh Lizzie.hill@ed.ac.uk PastedGraphic-1 Sleep-disordered breathing (SDB) is the commonest medical cause of sleepiness. Muscle relaxation during sleep leads to a partial or complete collapse of the airway, resulting in a repeated cycle of pauses in breathing. These breathing pauses disrupt sleep, leading to daytime sleepiness. A clinically-significant number of breathing pauses during sleep is known as obstructive sleep apnoea (OSA). Snoring can occur due to vibration of the narrowed airway. Children and adults with Down syndrome (DS) are predisposed to SDB because some of the common features of DS overlap with the risk factors for SDB. These include a tendency to be overweight, generalised hypotonia, short midface, thick neck, large tonsils/adenoids and a relatively large tongue. We think around 55% of children with DS have SDB. We have been running a research study here in Edinburgh to work out the prevalence of SDB in adults with DS. Early results from our survey of over 1000 people suggest around 20% of adults with DS may have OSA, with over three-quarters of responders reporting snoring and over a quarter reporting breathing pauses. Unfortunately, many of the daytime symptoms of OSA, which includes sleepiness, may be overlooked in individuals with DS and dismissed as “just part of their condition” ~ despite the increased risk of OSA in people with DS, only 7% of people in our study had been diagnosed with OSA, and only 5% were currently receiving treatment. However, untreated OSA can have serious consequences. Impaired daytime function can result in problems with learning and memory, and is likely to worsen cognitive impairment already present in some people with DS ~ one study estimates that untreated SDB in children can lead to a 10-point reduction in IQ. Sleepiness can lead to a generally reduced quality of life for the individual and their family. Repeated pauses in breathing cause surges in blood pressure, putting extra strain on the heart, and there is a high risk of developing pulmonary hypertension in children with OSA and DS, especially if they already have co-existing heart problems. National guidelines from the Royal College of Paediatrics and Child Health (RCPCH) state that all children with DS should
be screened for OSA at age 6-9 months using a test called oximetry, which measures blood oxygen levels using a finger-clip. If the oximetry result is normal, screening should be repeated annually until the age of 3-5 years. If the oximetry is abnormal, a more detailed sleep study at home or in hospital is recommended, recording further information on breathing, oxygen levels, body position, snoring and sleep stages. The Down’s Syndrome Association recently published a Health Book for adults with DS, which includes sleep as one of the areas to be reviewed by their GP annually. The first-line treatment for OSA in children is removal of the tonsils and adenoids (T&A). This cures OSA in the majority of cases. The first-line treatment for OSA in adults or children who still have OSA after T&A is continuous positive airway pressure (CPAP). This involves wearing a mask over the nose or nose and mouth, blowing pressurised air in to hold the airway open from the inside. However, this simple, non-invasive and generally effective treatment is a therapy rather than a cure and so has to be used every night to feel the benefit. One study showed improvement in sleepiness, behaviour and quality of life in 10 children with neurodevelopmental disability (including DS) when using CPAP. In Edinburgh, we looked at 28 adults with DS and OSA to see how they got on with CPAP. Of the 28 people in the study, 20 were still using CPAP after 12 months. Overall, using CPAP leads to significant improvements in sleepiness, general health, cognitive function and behavioural/emotional outcomes. The full results of this study will be available soon. In summary, children and adults with DS are at an increased risk of SDB/OSA which, left untreated, can have a negative impact on health and wellbeing. However, effective treatment is available and should be offered to all children and adults who need it, whether they have DS or not. If you suspect someone you know has sleep-disordered breathing, please visit your GP in the first instance. Further information Further information on sleep and DS for families: http://www.downs-syndrome.org.uk/for-families-and- carers/growing-up/sleep/ The British Lung Foundation provides a booklet on OSA in children, including a checklist to take to your GP: http://www.blf.org.uk/Page/OSA-in-children RCPCH guidelines on OSA and DS: http://www.rcpch.ac.uk/respiratory-medicine#RCPCH_sleep Information on sleep in adults with DS, aimed at GPs: http://www.downs-syndrome.org.uk/for- professionals/health-information-for-medical-professionals/annual-health-check-information-for- gps/ For more information on our research into sleep and DS in Edinburgh, please visit: http://www.ed.ac.uk/ schools-departments/clinical-sciences/sleep-research-unit

PastedGraphic-1

Time to pump up the pressure

TIME TO PUMP UP THE PRESSURE

A report by Ray Walker on the Scottish Sleep Forum held at Stirling on Friday 20th March

The second topic of the day was what would be the last report from Judy Smith (nee Harris) on behalf of the British Lung Foundation Obstructive Sleep Apnoea Campaign.

Although the BLF are not removing OSA from their list of Respiratory Disorders, it would not have such a high profile as they feel they have achieved what they set out to do.

BLF set up guidelines for medical professionals to follow to ascertain the numbers of untreated or undiagnosed OSA patients and what they would require in facilities and staffing levels to rectify the problem.

Dr David Sword, consultant in respiratory medicine at Ayr, had completed the questionnaire/guideline, with the expected result that no NHS Authority would fund such a service.

Dr Sword felt that the only way to raise issues with the powers that be is to set up patient pressure groups. Perhaps an area that SASA could be useful in. 

My immediate thoughts were that this would mean possibly creating other local groups as I think it would be unfair to ask the likes of Tom Irvine to become involved when he covers such a large area. 

There was something like 3,600  untreated or undiagnosed OSA patients in Ayrshire alone, so one would assume an Ayrshire group could be formed.

It was an interesting discussion although somewhat depressing in the knowledge that with present and future restraints on NHS spending no Sleep Centre is going to be able to improve its services.

BLF had been active in approaching MPs, MSPs and Government Health Ministers. This is an area where I think they will continue to try to have an impact but to what extent this will be is unknown.

Quote from BLF website ~

“At both a national and local level, little data is available on the prevalence of OSA. This makes it difficult for commissioners in clinical commissioning groups to effectively commission services, such as specialist sleep services, for people with OSA. 

“Action is needed to provide the evidence base to understand the scale of the challenge of OSA at a national and local level, and to deliver services that meet those needs.”

Phyllis Murphie felt she could find someone to carry on the information gathering that BLF did, but keep it within Scotland. I think she was hinting that financial support from SASA could help expedite this work, to the extent that a report could be prepared in time for our Conference. She will be in touch.

It is good to maintain the contacts we have made since attending the SSF, and although some of the reports are a little over our heads there could be more progress made in supporting the services we have.

All present at the forum, including manufacturer reps from Resmed, Dolby Vivisol and Fischer Paykel, were made aware of SASA’s 2015 Conference, which will be held at Low Port Centre, Blackness Road, Linlithgow EH49 7HZ, on Saturday, 31st October.