Alström Syndrome UK
Quality Manual
QM 001
Issue 1.0
Date: September 2009
Approved By
……………………………CEO
……………………………Trustee
QM 001 Issue 1.0
Created September 2009
Alström Syndrome UK
Updated – 19/11/2012
Next Review – 19/11/2013
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1.0 Introduction and Mission
1.1 Quality Policy
1.2 Key Performance Indicators
2.0 Organisation and Responsibilities
2.1Board of Trustees
2.2 Scientific and Medical Board
2.3 Officers
2.4 Contractors
2.4 Volunteers
3.0 Activities
3.1 Patient and Family Support
3.2 Education
3.3 Medical Research
4.0 Control Systems
4.1Policies
4.2 Data Control
4.3 Employment
4.4 Protection of Members’ Safety
4.5 Financial Control
4.8 Managing Risk
5.0 Conclusion
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Change History
Issue
1.0
Changes
Date
First Issue
However given that so far the charity has not become
involved in trade, board members will hereafter be
referred to as Trustees.
23/02/2012
Changed the word Trustee to Director.
Alström Syndrome is a very rare condition with
approximately 50 diagnosed cases in the UK and 600
worldwide in 2012.
23/02/2012
Changed the 50 to 60 and the 600 to 700 and the date
2.1 Board of Trustees
23/02/2012
Changed to Board of Directors
Word – Trustees changed to Directors throughout the
document
Asian Development Manager (Leeds and
Bradford area)
23/02/2012
As above but with responsibility limited to a
localised ethnic minority groups in the Leeds and
Bradford area as well as further a field.
Included further afield and Family Liason Officer
changed to Asian Development Manager
Added:
19/11/2012
The adult clinics have now moved to the Queen
Elizabeth Hospital, Birmingham from March 2012.
o Offering training about Alström
Syndrome
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1.0 Introduction and Mission
Alström Syndrome UK, (‘the Charity’) is a registered charity incorporated in April 1998. It
was founded by Mrs Kay Parkinson (now CEO), when her two children were diagnosed with
Alström Syndrome (AS). The stated aims of this charity as set out in the memorandum of
association:
1. The relief of sickness for persons with Alström Syndrome in particular but not
exclusively by the provision of support, advice, and information for such persons,
their families carers and those working with affected individuals.
2. The promotion of research into Alström Syndrome and related syndromes both in the
UK and abroad and the public dissemination of the useful results thereof.
These stated aims effectively become our mission statement:
ASUK Mission Statement
Provide support, advice and information to persons with or affected by Alström
syndrome.
Increase knowledge and awareness of Alström syndrome
Promote research into this and related syndromes.
These aims have been interpreted and restated in abbreviated form in the charity’s own
strategic plan as focussing effort in three areas:
 Patient and family support
 Education
 Support and sponsorship of research
Alström Syndrome is a very rare condition with approximately 60 diagnosed cases in the UK
and 700 worldwide in 2012. The syndrome encompasses many conditions which degrade the
quality of life and several which are life threatening. It is progressive resulting in an average
age at death of only 16 years among our members (as of 2008). Patients, families and carers
need considerable support not only to deal with the medical issues they face with the
condition but also to navigate the health, education and welfare systems which affect their
everyday lives. By its rarity, Alström syndrome is not well recognised even among the
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medical professions and diagnosis is often missed and treatment not optimised. For the same
reasons, research into AS has long been neglected. By providing support, advocacy,
information and the stimulation of research, the charity acts principally a service provider and
agency for change.
ASUK is an incorporated charity (charity No 1071196) and also a company limited by
guarantee (company No 3557191). Although it has company status, thus far it has not become
involved in manufacturing, retailing or any manner of trade, securing its funds instead from
individual donations, grant making organisations or by various fundraising activities and
appeals. As far into the future as can be currently seen, there is no expectation that this will
change. The charity has a policy of minimising the number of employees, relying upon
volunteers or self employed individuals contracted to provide the management and services it
requires. As the organisation has both charity and company status the board members could
be titled trustees or directors. However given that so far the charity has not become involved
in trade, board members will hereafter be referred to as Directors.
The Charity levies no subscription and offers its services freely to all patients, families of
patients and carers affected by Alström Syndrome. All who contact the charity for help or
advice, whether their subsequent involvement is great or small are regarded as ‘members’.
1.1 Quality Policy
This can be stated thus:
Quality Policy Statement
The trustees and officers of Alström Syndrome UK are committed to achieving
high standards of customer service and satisfaction.
This is achieved by identifying and measuring client valued objectives and by
implementing a process of systematic improvements as required.
In these terms ‘client’ can be take to include any person or organisation receiving or
providing a service, any partner, supplier or collaborator.
1.2 Key Performance Indicators
Key performance indicators are the chosen measures of ASUK’s objectives. These
may include but not be limited to:
The number of patients and families receiving our active support
Financial metrics
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Customer satisfaction level
Number of clinic referrals
2.0 Organisation and Responsibilities
2.1 Board of Directors
The decision making authority of the charity is invested in a board of Directors which
meets a minimum of 4 times per year. Individuals judged to have expertise or
experience relevant to the running of this charity are invited to sit on the board either by
the existing board members or by election at a conference of members and families,
(see 3.1.1Family Conferences). Directors will usually have personal experience of, or
specific interest in Alström Syndrome or similar conditions. Specific responsibilities
may be allocated to board members who have relevant experience. These
responsibilities may include but not be limited to:
Finance Officer/Treasurer
Quality System Manager
Web master
Adult patient representative
Family Liaison officer
Press or media officer
Medical / research representative
On appointment, Directors are provided with a copy of the Memorandum and Articles
of Association. A chair is elected by the members of the board to serve for a period of 2
years. A sitting chairperson may be re-elected for subsequent terms without limit. A
minimum of 6 Trustees will be appointed. The CEO will be a non-voting member of
the board of trustees reporting to the chairperson.
Where specific skills are required but not available within the board or wider volunteer
group, a responsibility may be subcontracted in which case a formal contract of
employment will be created. Individuals in this group unless specified otherwise in
their contracts will report to the CEO. Such contractors could include (but not be
limited to):
Fundraiser
Grant Adviser
Programme Manager
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In each case efforts will be made to ensure that the individual covers their own costs.
(For example the fundraiser will be expected to bring to the charity more funds than
they cost the charity through their contracted service). All members of the board,
officers, contractors and volunteers who may come into contact with children through
their association with the Charity will be subject to CRB checks to ensure that no
criminal history puts at risk any of our members. Furthermore, the CEO and all
Directors undergo Child Protection Training. The Board would typically look like:
Chairperson
Trustee
Trustee
Trustee
Trustee
Trustee
Trustee
1
2
3
4
5
6
CEO
1
Contractor
1
Contractor
2
2.2 Scientific and Medical Board
The scientific and medical board is an advisory group composed of eminent clinicians
or medical researchers who have experience or a specific interest in Alström Syndrome.
The purpose of the board is to;
Provide a means for exchange and sharing information about diagnosis, treatment
and investigation into AS.
Advise the charity on medical and scientific matters relating to AS.
Stimulate research into AS
Help the charity pursue its educational aims.
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There is no upper or lower limit to the size of the Scientific and Medical Board and it
has no jurisdiction over the running of the charity. Membership is by invitation and the
board meets annually at the Family conference. (See 3.1 Patient and Family Support).
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2.3 Officers and their roles
CEO
As founder of the charity Mrs Kay Parkinson holds the position of CEO. In addition to
dealing with the day to day working of the charity, she also acts as the first point of
contact for new members and through the shared role of family liaison provides
emotional and practical support to patients and families. Mr and Mrs Parkinson
together with the Family Liaison Officer (Leeds and Bradford Area) support and
manage the regular clinics on behalf of the charity. In this role they act as self
employed contractors.
Among the Directors individuals have been allocated the following responsibilities:
Treasurer.
The treasurer monitors tracks and controls revenue from all sources, authorisation of
expenditure and preparation of annual accounts for audit.
Family Liaison Officer
The family liaison officer provides emotional and practical support to members. HE/
she maintains an emergency 24/7 help line and will when appropriate intercede on
behalf of members acting as advocate with state organisations such as NHS, DHSS,
LEAs etc.
Asian Development Manager (Leeds and Bradford area)
As above but with responsibility limited to a localised ethnic minority groups in the
Leeds and Bradford area as well as further afield. In particular this role is relevant to
organising and supporting members to maximise the benefits gained from AS clinics
held in that area. This role is funded by the National Commissioning Group and the
post holder is currently a self employed contractor
Webmaster
Maintains the ASUK web site (www.alstrom.org.uk)
Adult Patient Representative
This person expresses the views and interests of adult patients on the board. Given that
this syndrome appears in childhood and is often life limiting, mature patients represent
a special group with their issues own and interests.
Grant Advisor and Programme Manager
These could be separate or combined roles depending upon the skills available. The
post holder identifies and applies for grants to pursue projects of particular interest to
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the charity. This may include but not be limited to research, capital or educational
projects. Where a grant is obtained the project will be delivered by the programme
manager.
Publicity and Media Officer
This person advises and acts on all aspects of publicity and media interaction.
Fundraiser
This person uses contacts and experience of charity fundraising to secure revenue for
the charity.
2.4 Contractors
As a matter of policy the Charity seeks to avoid directly employing personnel. Where
the management of the charity or the delivery of charity services is not possible using
only the skills of volunteers, appropriately qualified individuals will be subcontracted
to do so. At present contracts are in place to deliver:
Fundraising
Clinic organisation and support
Family liaison services
Grant advice and programme management
Asian Development Manager – and support in the Leeds and Bradford area.
Accountancy and independent auditing
2.4 Volunteers
The charity relies heavily upon the good will and time offered by volunteers. These are
drawn mainly from our own membership, the medical and educational professions,
schools or other charity groups.
3.0 Activities
3.1 Patient and Family Support
The first and primary purpose of the charity is to support its members. This includes
crisis support through a 24 hr hotline and encompasses emotional and practical advice,
advocacy and where appropriate intercession with statutory service provider such as
LEAs, social services and NHS.
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3.3.1 The Annual Family conference
Each year ASUK organises a 2 day Family Conference. This allows members and
families to meet in a relaxed atmosphere and exchange experiences, update their
knowledge of AS and enjoy a little respite time. On one of the days, a parallel
children’s programme will take children on a local outing where they will have a fun
away from their parents in the care of volunteer helpers. The location of the
conference if carefully chosen to provide the specialist facilities for the disabled
which our members need, minimise travel demands, and give access to a hospital
which can provide clinic facilities. The latter requirement is a major consideration
because the family conference is usually followed immediately by a
multidisciplinary clinic. (Before the NHS clinics were started this was the only
general multidisciplinary clinic available and was provided then by the generosity of
the hospital doctors involved who arranged facilities and freely gave of their time).
Part of the family conference is devoted to the charity’s Annual General Meeting
and a separate meeting of the Medical and Scientific Board.
Specialists in Alström Syndrome are invited to speak about the condition, advances
in knowledge and treatment. Other specialists are invited to speak on aspects which
affect our members’ daily lives such as education, social services, equipment for
sight impaired etc.
Patient feedback is sought at every conference to help the board to identify
improvements which can be made to the service it provides.
3.2 Specialist Alström Clinics
In 2006 ASUK was instrumental in encouraging the National Commissioning Group to
fund regular specialist Alström syndrome clinics at Birmingham Children’s Hospital
(for children) and at Torbay Hospital (for adults). In 2007 ASUK again broke new
ground by convincing NSG of the need for direct ASUK participation in delivering this
clinic service. Since then ASUK has been an equal partner with Birmingham Children’s
Hospital NHS Trust and The South Devon NHS Trust in delivering and improving this
service. While maintaining responsibility for the service, ASUK contracts out its
delivery. Monthly reports are sent to the NSG and ASUK attends a 6 monthly reviews.
The adult clinics have now moved to the Queen Elizabeth Hospital, Birmingham from
March 2012.
3.3 Education
Alström Syndrome is very rare and therefore little known, even among the medical
profession. AS UK aims to educate patients and professionals alike through:
o Publication of informative literature
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o Providing expert speakers at family conferences
o Maintaining an up to date website explaining the condition and where to get
help for patients and containing a web page for professionals.
o Providing speakers to national and international meetings on AS or similar rare
diseases.
o Offering training about Alström Syndrome
3.4 Medical Research
ASUK is conscious that long term improvements to life expectancy and quality of life
for its members will only come through advances in medical knowledge. Through its
interaction with Medical and Scientific Board members, ASUK encourages research
into all aspects of the condition. In this regard the regular specialist clinics provide
invaluable access to a patient group and therefore opportunities for research rarely
afforded to other similar conditions.
ASUK, through its grant advisor or fundraiser, also actively seeks out funding from
other sources specifically to finance research. By these means we aim to advance
knowledge into diagnosis and treatment at the clinical level and greater understanding
at the fundamental level of genes and cells.
4.0 Control Systems
ASUK makes every endeavour to ensure it operates ethically and in accordance with best
practice. Control systems are based upon active, documented processes and procedures all of
which are drawn to the attention of all new members the board of Directors on election or
appointment. Given the small size of the charity, attention has been focused on those aspects
which are,
a) required by law and
b) deemed pertinent to the nature, scale and ambition of the charity’s operations.
4.1 Policies and Operating Procedures
Wherever it is deemed necessary, (for example to meet the requirements of UK law or
good practice), or simply to be of benefit in clarifying the charity’s operation, a formal
policy document or operating procedure will be drawn up and approved. Examples of
these include but will not be limited to:
Financial control
Data protection
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Protection of vulnerable people
Recruitment and Employment Policy
Strategic plan
Etc
Any formal document will contain the name of the charity, an issue number and an
issue date. Each policy document will be formally approved by the CEO and at least
one trustee. Signed hard copies will be held at the registered office of the charity.
Where revisions occur the document issue number will be changed and the changes
recorded in a revision history sheet.
4.2 Data Control
The charity is entrusted with a great deal of personal information much of it of a
sensitive nature. The charity is keenly aware of its responsibilities under the data
protection act of 1998 and takes all reasonable steps to ensure that no information is
divulged without authorisation to a third party and that it maintains adequate security of
all the data it holds. The procedures for acquiring, managing and securing such data are
set out in a formal policy document. ASUK is registered with Information
Commissioners Office, (previously the Data Protection Agency).
The web site is a place where data is made public. Every effort is made to ensure that
this information is correct and current. No information concerning individuals,
including names and contact details is posted without their express permission. The
maintenance and control of the web site is detailed in an operating procedure.
4.3 Employment
It has been explained that currently the charity has no employees but that situation
could change and it does in any case have sub-contractors and volunteer post holders.
Where employees are needed, the charity will advertise the posts either nationally or
locally depending upon the type of post and experience required. (For example it may
be necessary to recruit from that small pool of individuals who have personal
experience of AS or similar rare diseases and / or have specialised expertise appropriate
to the organisation’s needs). Formal job descriptions are drawn up and no
differentiation between candidates is made by way of race, colour or religion or sexual
orientation. The charity is committed to treating all persons who work on its behalf in
whatever capacity, fairly, reasonably and equitably.
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4.4 Protection of Members’ Safety
The charity serves the needs of UK Alström patients and families which involves many
children and vulnerable adults with a range of disabilities. It is therefore extremely
conscious of its duty of care. In addition to the data protection act 1998 which controls
the way information about individuals held on a database can be used, the safeguarding
vulnerable Groups Act 2006 seeks to ensure that the wellbeing of children and
vulnerable adults is protected. All ASUK post holders (including Trustees and CEO )
whether volunteer or contracted, are subject to a police CRB or IBB checks in
accordance with the relevant legislation. The same is applied to groups of volunteers
who assist at family conferences.
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4.5 Financial Controls
Funds are received by the charity from a variety of sources including individual
donations, grant making authorities fund raising events etc. Funds given for a
particular purpose (restricted funds), are held in separate accounts created especially for
that purpose.
Financial control of charity money is the responsibility of the CEO and the Treasurer.
Disposition of funds up to a maximum of £1500 without further authority can be made
by the CEO and Treasurer. Larger sums require the prior approval of the board of
trustees. All cheques signed on the charity’s behalf must have two signatories at least
one of whom must be a Trustee.
An annual report and approved set of accounts are generated by the chairperson and
Treasurer and submitted to the Charity Commission.
4.6 Managing Risk
By careful planning and regular operational reviews, the charity does all in its power to
anticipate risk in relation to its goals and activities. Nevertheless, in the event that good
planning may not be sufficient the charity holds and maintains appropriate Public
Liability and Employers liability insurance, (commencing October 2009).
5.0 Conclusion
Although ASUK is a small charity supporting a small number of people, ASUK aims to
operate in a professional way aspiring always to best practice in its management and
activities. This commitment to quality is incorporated in this document but more importantly
in the behaviour, commitment and actions of its Board of Directors, officers and volunteers.
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