Alan, 47, is the deputy manager of the Helen, 39, has an acquired brain injury
Morven day centre. They provide free after an accident 5 years ago which has
services for adults with mental health left her with short term memory loss
Alan coordinates activities for members of who come to the centre and has often had Helen is not a ‘yes’ person. She is very the ABI network, having a committed role in
the public covering vast subjects like; Art, to step outside of his organisational role to strong and independent and has had to fight organisations like Brainiac and Headway. She
Relaxation, Creative Writing, Drama, Pool, spend time with ‘clients’ working through since her accident for support which she uses the internet to comment on blogs and
Discussion groups, Music, Tapestry, Rug personal issues and referring them to further says was hard to find. She has two sons who forums but doesn’t consider herself a great
making, Computing, Football, Horse riding, support services. attend school and rest bite once a week. internet user.
Abseiling, Canoeing, and Ten Pin Bowling. Helen has developed a list of useful contacts,
hints and tips and additional services that can “I know through my
At The Morven Centre there is an open “Nothing can replace help anyone living with a disability. knowledge and experience
referral system, firstly contact is to be made
first with staff at the Centre by letter or a person who has that this can help other
telephone. information” “If someone had given people. It is different
me this list, It would have speaking to someone who
“we don’t use the internet Alan is a friendly character and comes helped me” knows what it is like”
across as very approachable, he is also very
for much, just ebay really” knowledgeable of what other activities Helen uses her mobile phone all the time.
Helen is very willing to go and talk at events
are available in the local community of She often takes photos on it to capture
Alan has a good relationship with the people if she thinks it will help spread awareness of
Kilmarnock. things she has seen. She is very pro active in
Ashley, 23, has been a care nurse for The Ayrshire Multiple Sclerosis lunch
4 years and works in a home looking group meet up twice a month to share
after a variety of residents food and talk
Ashley is a young and vibrant carer in she wishes attitudes were more relaxed and The group has a large variety of different “We rely on Catherine to
Kilmarnock. She works five days a week and she was given more freedom to bring new attendees spanning different age categories. keep us up to date.”
has formed a very close relationship with activities into the home. There is no internet
some of the residents she looks after. in her workplace and says she has gone as People are often referred to the group The group have a regular time slot so there
far as to look up activities for residents, then through the Douglas Grant Rehabilitation isn’t too much communication needed
“In the care home we don’t make and print posters at home to stick up centre which advertises the lunch event on through one another, and if there is a change
on her work’s notice board so family and leaflets.
have the internet that carers friends of residents will take more notice.
to schedule, there is a list of home phone
can use, but we do need the numbers.
internet to look up stuff for “This is not a moaning shop
“If would be great if we and we don’t want talks on Some of the lunch group have to travel by
medical conditions” could have posters delivered bus and say it can sometimes be a struggle
Ashley is ‘addicted’ to facebook. She uses
to the home with activities getting to the centre because of changes in
in the local area on them timetables or bad weather conditions.
it to keep in touch with all her friends and Catherine who runs the lunch group uses
family and upcoming events, she says she and more up to date the internet to search for breakthroughs in
couldn’t live without her mobile. Ashley has transport info...I need more M.S treatment and sometimes brings this
found it frustrating working in the care home things for the residents to information to the group but says largely
as there is alot of red tape to step around, they all come attend to just catch up.
Marjorie, 68, has osteoporosis and Kate, 19, has eczema and psoriases.
has been diagnosed for 8 years. She She is in constant pain and finds it
regularly takes part in activities to keep difficult to cope
Marjorie is now retired but used to work as phone to my children, I’m Emily, Kate’s cousin is 14 and goes to Newark would do anything to take the pain away , so I
a primary teacher. She has two children who not very good at the web High School. She is feeling helpless and has was wondering if anyone who has dealt with
she keeps in touch with on the phone.
stuff” turned to the internet to try and find out this and been through it could give me any
how she can support her cousin; advice.. what helped you the most ? and what
Marjorie is the secretary of the Osteoporosis can I do ? I hate feeling so powerless can
Marjorie regularly receives copies of the
Society Kilmarnock District support group “I found this blog on Psoriases about an hour anyone help ?”
osteoporosis magazine which is distributed
and keeps in touch with head office via email. ago while I was trying to read up on psoriasis
throughout the UK. The local group regularly
She’s not ‘internet literate’ but knows how to
work her email.
have meetings and share new activities and psoriatic arthritis , my cousin has both “I thought maybe people
they come across, they invite the local sadly and I wanted to know everything I would think I was stupid
could about it. She has been like my sister
She is a member of the local church and
professionals to their group and say that they
ever since she came into my life and we
because I’m so young. I’m
all have a close relationship with them.
undertakes lots of activities such as bowls are extremely close. It kills me that she is only 14 but I care so much
and tai chi.
“The radiographer and in constant pain and that I cant do anything and I can’t stand the feeling
surgeon come to our to help her. She’s had this for about fifteen of not being able to help her
“I keep in touch with the years now , diagnosed when she was 10 she because she is always there
society via email but on the meetings” is only 19 now and feeling like she’s 80 . I for me.”
Karen, 48 is chair of the Strathclyde Hugh, 52, is the project co-ordinator
Lupus group, who organises meetings for Helping Hands, which provides help
and sends out newsletters to the with small DIY tasks
society Hugh has been running Helping Hands since
1995. Clients call when work is required, he
Hugh says he often acts as a sign post for
other services, and has built up knowledge of
Karen is a cheery and very busy individual. her condition as they can’t always see it.
She was diagnosed with Lupus 18 years ago Fatigue is what effects her the most. says they work alot with elderly and disabled supporting services through interacting with
and has now found the right medication to people. People pay £5 a year for the service. clients.
keep it under control. “Sometimes it can take Work can include cleaning out cupboards, “Part of the job is if you see
people months to get in small DIY tasks like fitting carpet strips and
She chairs the Lupus society who meet
touch with us...the group hanging up curtain poles.
that person as maybe down
monthly and organises a news letter for the that day, you talk to them,
west region of Scotland. She’s a competent ends up becoming a lifeline
computer user and spends quite a bit of time and long lasting friends are They have a simple leaflet that details the and you try and strike up
online. made who understand each work they do that is distributed around local a bit of a friendship with
libraries and community centres. He says them”
they don’t have the money to build a website
“I use facebook twice a so their main contact point is the phone. Alot of clients are signposted by staff at the
day” Karen says the Lupus group is not a moaning
hospital or by social workers, it is very much
shop, but they welcome along new members
Karen has two kids who she keeps in and accommodate their questions they may
“The biggest majority of a word of mouth service. They sometimes
contact with over the phone. She says it is have about the condition. She says the group our advertising is word of advertise in the local paper which they can
mouth. It just snowballs” get for free.
difficult for family and friends to understand is like a family.
Mary, 55 has just been diagnosed with Lynsey, 23, is an accountancy student
Lupus. She had been told she was at Stirling University. She has just been
suffering from depression diagnosed with depression.
Mary has been married to Stuart for 33 years comes acceptance that this Lynsey has been studying for two years, her She just wants to feel herself again. She
and has two kids who still live at home. She dad is an accountant so she felt pressurized knows there is a student counselling service
is a debilitating disease” to follow in his footsteps. The maths doesn’t available but she is too embarrassed to visit
doesn’t like the internet, but her husband
Stuart keeps her up to date on news. come easy to her and she often finds herself them.
Mary says she needs support from people
feeling hopeless and feels very guilty for not
who understand her. She says,
“I went to the library to being clever enough. She read a blog post “The internet is my
look up books on Lupus but about depression on The Guardian website second home - I think I am
“My friends don’t and realised she had every single symptom.
they just told me the worst understand, I wish they did, After searching google for a few hours and
addicted to it”
case scenarios” sometimes you have to scouring forums she made the decision to
Lynsey uses Skype to video call her
cancel meet ups 5 minutes book an appointment with her local GP. At
mum every day, she carries her i-phone
Mary had been feeling low and tired for a
long time and after visiting her doctors was
before because you can feel the time, speaking to a GP online would have
everywhere she goes to take pictures, make
been ideal for her but she couldn’t see any
diagnosed with depression. She had to give fatigue at the drop of a hat” sites that offered that service. calls, listen to music and search the internet.
up work and became worse. She has a twitter account where she posts
She is a shy person and is nervous about mini updates and keeps a blog about the joys
meeting new people. She has phoned the “I just want to be able
“Being diagnosed is the first Lupus line a few times but hung up before to talk a GP without him
stage, getting a label, then getting through. having to see me cry”
Michelle is the mother of Lisa who is Paul, 38 is a physiotherapist at Nuffield
14. She often finds it hard to connect Health Glasgow Hospital who treats
with her daughter who has arthritis patients with physical difficulties
This past week has been a total mixture of is so much happier in herself although her He treats people of all ages including children, Sometimes the staff in his ward find
emotions for Michelle, mum to Lisa. Last appetite is non existent. the elderly, stroke patients and people with interesting articles and pin them up on the
Tuesday she had a call from school saying Lisa sports injuries resulting from illness, injury, staff room notice board but it is very rare
was in so much pain etc. She was starting to “I am so proud and happy disability or ageing. Many of his patients have that anyone pays attention to them.
feel pretty bad but Friday came along and she and wish I could share my a long term condition.
had her 4th dose of mtx and since then she’s
experiences with other “I try my best to keep
turned a corner. He uses his Nokia mobile for most of his my work and personal life
mothers” communication - his alarm, diary, calendar,
Today Lisa had her swimming lesson and address book, phone calls, camera and text
separate, but sometimes
it was like watching a different child. She They have a close relationship but Michelle messages. He has three email accounts, one you just can’t”
climbed out and jumped in herself, she sat on wishes she knew more, or could connect for work, one for personal use and one for
the side by herself and it was like watching with other parents to understand how they junk mail. He usually checks this on his phone He says he will email or call a patient If he
the old Lisa before all this started. It brought have dealt with the highs and lows of having a and doesn’t venture onto a laptop or a PC notices they are feeling down.
tears to Michelle’s eyes to see. child with a long term condition. very often.
“I know of most of the
Lisa saw a consultant today and she is very “I just want to be there for “Did you know that, if you helpful services someone
pleased with her progress. Mother and my daughter and support visualise, you can actually can use or people they
daughter are still doing hydro and physio. Lisa her in the best way I can” hug on the phone?” could connect with.”