Here - INS

The Newsletter from Integrated Neurological Services
neuro-support, for life
Spring 2015 Issue 11
Supporting people with Multiple Sclerosis, Parkinson’s disease, Stroke and other neurological conditions
Inside this Issue
Help INS to
Help you
Page 2
Seize the Day! Dame Tanni Trumpeters’
Grey-Thompson gives a
Garden Party
talk for INS Page 3
for INS Page 3
Tel: 020 8755 4000 www.ins.org.uk
Trumpeters’ Garden near Richmond Green,
where INS will hold a garden party in May.
Integrated Neurological Services, www.ins.org.uk
Help INS to help you
I have an incurable condition but I count myself lucky…
I’m lucky because I am an INS client,
lucky to get the help and support INS
gives. I realise that as my condition
(Parkinson’s) progresses, I am going to
need increasing amounts of help and
support from organisations like INS.
While I can, I will be helping and supporting INS and
its work so that it will be there for myself and others.
INS is an award-winning organisation. It has 35 full
or part time staff, around 85 volunteers and over 600
clients. It runs two centres and also provides visits to
about 200 housebound and isolated clients at home.
The money it spends goes on services to its clients, not
on showy premises and big offices. Apart from a few
special activities it doesn’t charge for its services, and
even these are free if people can’t pay.
Some activities are paid for by Lottery money and
other grants and some by contracts from the NHS,
local councils and for teaching medical students.
INS also raises money from events like concerts and
garden parties. But it still needs donations from clients.
You might think that since INS gets other funding
it doesn’t need donations from its clients – but you
would be wrong.
£10 Could train and support our volunteer
Befrienders, who make regular home visits
to clients.
£30 Support the cost of someone to attend a short
programme, such as Fit Club or Hydrotherapy
£60 Aid the cost of INS input at the weekly INS@
Homelink day support service, which also
provides respite to over-stretched carers.
How can you donate to INS?
Where INS gets its money
Getting money from the Lottery, local Councils,
businesses and charitable funds is difficult and there
is a lot of competition for it. INS needs to demonstrate
that it is doing something that the community needs
We need
to raise
£130,000
Events &
Other Income
£65,000
Donations
£70,000
and supports. Donations provide vital evidence of
how much the community values an organisation. The
more we clients give, the more INS is likely to get from
other sources.
So every month I donate an amount I can afford.
I have a regular monthly standing order – that way
INS knows what money will be coming in and I won’t
forget!
Every donation can make a difference to
someone’s life. Here are some examples of
what INS can do with your monthly amount:
Grants &
Contracts
£435,000
The best way to donate is by a monthly standing order.
You can:
• Set up a standing order through your bank to make
a regular monthly payment to INS. Please call the
office if you need more information (020 8755 4000)
or pick up our donation form.
• Make a cheque payable to INS and send to
82 Hampton Road, Twickenham TW2 5QS.
• Make a donation online at www.ins.org.uk or
through the office.
• Sign a Gift Aid form so that INS can claim an
additional 25% on your donation
We are lucky to have INS helping us and our carers
in so many different ways. Please support INS with
a regular monthly donation so it can be there for
all of us.
Thank you.
George Foster, Parkinson’s client
2
Spring 2015, Issue 11
Fundraising
Raising funds and raising awareness • Thank you for your support!
Seize the Day!
Tickets now available to hear Paralympian Dame Tanni Grey-Thompson
give a talk on how she uses the lessons learned in the sporting world
to great success in her political career. This fundraising event for INS is
taking place this year at St. Paul’s School, Barnes, which is generously
being provided for our use free of charge. The bar opens at 6.00pm and
the lecture will be followed by a substantial buffet supper. Do come
along to a great social event. Tickets cost £20 for lecture only and £32
for lecture plus buffet supper and are available from the INS office.
Tuesday 28th April, Venue: St. Paul’s School, Lonsdale Road, SW13 9JT
Lecture starts at 7.30pm.
Trumpeters’ Garden Party Midsummer Concert
On Sunday, 31st May INS will host a garden party in
Come and share a glorious midsummer’s evening at
this magnificent garden by Richmond Green. A rare
St Peter’s with wonderful music from all over Europe,
opportunity to see this garden of over two acres
and an interval glass of wine too, all in the beautiful
running down to the river, which is on the site of King
setting of Petersham’s ancient church. Our thanks to
Henry VIII’s Richmond Palace. It is open for us through The Revd Canon Tim Marwood who has offered the
the generosity of Baroness Van Dedem.
proceeds from this concert to INS.
In addition to the sweeping lawns in
The concert will feature the
front of the Grade I listed, early 18C
Petersham Consort, singing
house, and varied garden rooms to visit,
collectively and as soloists too, and
there will be a raffle, numerous stalls of
covering a broad spectrum of musical
arts, crafts, plants and foods, as well as
styles, all celebrating midsummer, the
musical interludes, children’s activities
time
and an endless supply of tea and cakes!
of the solstice, when the sun is at
So bring the whole family for a wonderful The gardens at Trumpeter’s House
its height.
afternoon – and please tell your friends.
Sunday, 21st June at 6.00pm. Venue: St. Peter’s
Venue: Trumpeters’ House, Old Palace Yard,
Church, Petersham, TW10 7AB
Richmond, Surrey TW9 1PD, Time: 2.00 – 5.00pm,
Tickets: £10 each available from INS –
Entrance: £5 per person, children under 16 free.
[email protected] or call 8755 4000.
Tickets available from INS.
Thank you to everyone who came to our Carol Concert
at Holy Trinity Church on Twickenham Green for a
medley of choirs, opera, readings and instrumental
music. The evening raised £2,365 for INS.
Our grateful thanks to the church for allowing us to
hold the concert there, to the Archdeacon Cambridge’s
School choir who set the tone for a delightful evening,
to the National Opera Studio whose singers brought
tears to the eyes of many in the audience with their arias
from La Boheme, to Kate Feldschreiber, music therapist,
who not only delivered a rousing performance together
with a group of fellow instrumentalists but also trained
and led the INS choir. Finally thanks to the members
of the INS choir who put on such a great performance.
Audience enjoyment was evident and, at the mulled
wine reception afterwards, approval appeared
unanimous, with many calls for another concert in 2015.
In January, a wonderful evening of dancing to music
from the 60s onwards performed by The Reptiles was
another great success. Huge thanks to Angela Willman
and all her fellow band members for giving us such a
great time and thanks to The Avenue Club in Kew for
providing the venue. We raised over £2,000 for INS.
The Grand Raffle held before Christmas raised over
£5,500 – thank you so much to everyone who bought
tickets and well done to the lucky prizewinners.
3
Integrated Neurological Services, www.ins.org.uk
A Question of Balance
So, what do we mean by
balance?
It is your ability not to fall!
Maintaining balance is essential
to allow you to perform normal
everyday tasks such as standing,
walking or climbing stairs.
There are three sensory systems
that have to work together with your muscles to keep
you balanced: vision, sensation and your vestibular
system (which is found deep inside your ear and tells
you where your head is in relation to gravity). Muscles
are important not only to help you move or stand still,
but they also have to react quickly if you wobble to
help you regain your balance.
What happens when it goes wrong?
A reduction in balance is normal as we age, and is
especially common in neurological conditions. It
happens when there is a problem in any of these
sensory systems or with your muscles, and means
you are more likely to fall. For example if you have
decreased sensation in your feet and ankles you may
find it more difficult to keep your balance on thick pile
carpet or walking on a slope in the dark such as at the
cinema. If you have a problem with your vestibular
system you may find it difficult to keep your balance
when you move, for example when you stand up. If
your muscles are weak you may find it more difficult
to recruit the muscle activity you need around your
ankles and legs to maintain your balance if you slip
or trip.
What can I do about it?
While not all problems with balance can be fixed,
there are usually things we can do to try and reduce
the risk of falls. Balance exercises and leg strengthening
exercises can reduce falls and there are lots of ways to
work on these. For example, we have group exercise,
Nordic walking and even use the Wii balance board
for balance exercises which is great fun. Some balance
exercises concentrate on head and eye movements to
help people interpret visual and vestibular information
more effectively.
We also look at ways to compensate for poor balance,
like using walking sticks or aids to help with everyday
tasks, or even looking at the way you do things and
finding safer ways. So if you have concerns about your
balance, please get in touch with me and we will help
identify what is best for you.
Jo Jethwa, Senior Physiotherapist
Top 5 Balance games on the Wii Fit
1. Deep breathing
(found in the Yoga
games)
Works on simple standing balance. Stand on the balance board and try
to keep your balance. The red dot indicates how much and how
far you are moving – try to keep it inside the yellow circle.
2. Table Tilt
(found in
balance games)
Shift your weight back, forward and side to side to tilt the table and
drop the marbles down the holes. A gentle introduction to shifting
weight and working on balance.
3. Ski Slalom
(found in
balance games)
Shift your weight left and right to ski through the flags, lean forward
to go faster. A more challenging balance game.
4.Heading
(found in
balance games)
Shift your weight to the left and right to reach the ball and head it.
But avoid the boots and pandas! Fast and unpredictable – great for
a high level balance challenge.
5. Perfect 10
(found on the
Wii Fit Plus CD)
The aim is to light up the mushrooms that add up to 10 – stick your
hips out to the left or right, forwards or backwards to bump those
mushrooms and make the perfect 10. An extra challenge for your
balance because you’re multi-tasking!
4
Spring 2015, Issue 11
A good night’s sleep
Sleep: “Balm of hurt minds, great nature’s second course, Chief nourisher in life’s feast” Shakespeare,
Macbeth Act 2 Scene 2
A good night’s sleep is part of a
balanced lifestyle and is important
in keeping as healthy as possible.
For many of us however, sleep
does not come easily or is not as
restful as we would like. Many
people have trouble getting off to
sleep, others wake up in the middle of the night
and can’t get back to sleep, others have to make
frequent trips to the toilet at night and so their sleep is
disturbed. Added to this are problems associated with
neurological conditions, for example, many people
with Parkinson’s have vivid and disturbing dreams. For
some, moving around in bed and getting in and out
of bed can be tricky too. Often, worrying about not
sleeping makes the problem worse and it is easy to get
into a vicious circle of not sleeping at night, worrying,
trying to catch up on sleep in the day and then night
time sleep getting even worse.
Sleep facts
There are different phases of sleep: we sleep most
deeply in the early part of the night and more lightly
towards morning.
Short periods of wakefulness at night are normal: we
all wake up several times a night, but usually this is so
brief that it isn’t noticed.
We dream most when we are sleeping lightly, usually
towards the end of the night.
There is no standard amount of sleep: the amount of
sleep an individual needs varies from only a few hours
to 10 or more. Six to nine hours a night is average.
Tips for sleeping better
Tackling sleep problems can be difficult and it can be
helpful to keep a sleep diary to track how much you
are actually sleeping in a 24 hour period and what
might be affecting your sleep. Some other tips to help
improve sleep are:
Think about your environment: is your bedroom
comfortable, dark enough, too hot or cold or too
noisy? Try to make it as calm and relaxing as possible.
A bedtime routine is not just for children: preparing
for sleep signals to your body that it is time for bed.
Perhaps do something relaxing, such as listening to
some music, have a milky drink and generally prepare
yourself for sleep.
If you can’t sleep, don’t lie awake worrying: try getting
up and doing something else until you feel sleepy
again; this helps break the link between being in bed
and not sleeping.
No screens: the type of light from mobile phones,
computers and iPads is very disruptive to sleep.
If you have problems sleeping, try to keep these
out of the bedroom.
Getting up: try to get up at the same time each day,
regardless of when you went to bed. This helps to
maintain a regular body rhythm.
Daytime: Just as lack of sleep impacts on how you feel
during the day, how you spend your time will affect
how you sleep.
• Do some exercise every day, but not too close
to bedtime
• Don’t drink tea or coffee after late afternoon
• Avoid sleeping during the day, or if you do, only
sleep for a short period, ideally less than half
an hour.
The INS occupational therapy team run a ‘Better Sleep’
course. This looks at sleep problems and how to deal
with them in more detail. Please contact us if you
would like more information about this.
Sheila White, Senior Occupational Therapist
References and further information
Insomnia and poor sleep [Online] Available from: http://
www.patient.co.uk/health/insomnia-poor-sleep
[Accessed 13th March 2015]
NHS Choices. Living with insomnia. [Online] Available
from: http://www.nhs.uk/livewell/insomnia/Pages/
insomniahome.aspx [Accessed 13th March 2015]
Craft Evening
In December, Caroline Blomfield, a longstanding supporter of INS, held a craft evening in her home in Kew and
gave the proceeds of the sale of wine to INS, plus donations from each of the stallholders, raising nearly £500.
Our thanks to Caroline and all who participated.
5
Integrated Neurological Services, www.ins.org.uk
Hassle free holidays
Holidays should be the one time in the year when you can forget everyday concerns. But,
if you have a disability, it’s important to take the advice of experts in this area. We have
gathered the following tips and information from Fiona Jarvis (pictured left), INS client and
creator/owner of Blue Badge Style (www.bluebadgestyle.com) – a website for the disabled –
and Cathie O’Dea (www.travelcounsellors.co.uk/cathie.odea) who is a Travel Counsellor and
specialises in arranging travel and holidays for people with disabilities.
codeine into the country, this includes strong
Getting there by plane or train is
painkillers so it is always advisable to carry a doctor’s
much easier than it used to be as long as you use major
letter confirming that you are carrying prescription
carriers. Fiona says “I’ve never lost any equipment or
medication
incurred any damage but I have had to wait for ramps
at stations or airport staff to come get me off a plane.
•Any pre-existing medical conditions must be declared
to the insurance companies before travel to make
We’ve collated the disability services for all the major
sure these are adequately covered. Blue Insurance
airlines in one place on our website so this is a useful
(http://www.blueinsurance.ie/) have a special medical
starting point. With regard to rail travel we’ve also got
screening line to check if you can be covered under the
all the UK information”.
normal policy, or try https://www.goodtogoinsurance.
Top tip:
com/index.php/a/54, which is good for those with
Expect the unexpected. It takes a lot of phone calls and
chronic illnesses or disabilities.
emails to ascertain exactly what a disabled bedroom
•For the flight there are three types of wheelchair needs
or bathroom looks like. For example Fiona arrived at a
– not being able to walk long distances, not being able
villa that said it was flat access and it was - except for the
to climb aircraft steps and needing the small cabin
4-inch lip into the shower! Now she always asks for email
wheelchair and close to the toilet. Some airlines require
photos of the floors.
a medical certificate for the 2nd category and most will
Other sanity savers:
need one for the 3rd category.
•There is a government website (www.gov.uk/foreign•Don’t
forget your medication and take some in your
travel-for-disabled-people) which answers many
hand luggage and some in a suitcase. Drugs left at
questions for overseas travel.
home can’t be airlifted to your destination - it’s illegal!
•When booking travel or accommodation, be specific
•Make sure your phone has all the essential numbers in it
as to the type and severity of any relevant problem
•Take a copy of booking confirmation emails so you can
you have.
prove what you have booked
•If flying could be risky for your health condition, some
•Don’t forget your European Health Insurance Card (EHIC)
airlines may require a signed medical certificate and
the technical questions often need to be answered by a •Make sure your wheelchair is serviced and take a pump.
•Remember your disabled equipment can go free on
medical expert so allow enough time to organise this.
most airways.
•Specific medication such as ampoules or oxygen need
•Take a rubber ring with handles for getting into and
to be security cleared in advance and also prosthetic
out of the pool.
limbs, pacemakers and any joint replacements etc.
•Countries such as UAE do not allow anything containing Lastly, it’s a holiday, so have fun!
INS Library at Hampton Rd
Here is a list of recent additions to the INS Library:
ANDREWS, Ann. I have Parkinson’s: what should I do?
DOUGLAS, Kirk. My stroke of luck
DUTTON, Rebecca. My last degree: a therapist goes
home
HAWKING, Jane. Travelling to Infinity: my life with
Stephen
LINDLEY, Richard. Understanding stroke
MARRIOTT, Hugh. The selfish pig’s guide to caring
6
MAXWELL, Grace. Falling and laughing: the restoration
of Edwyn Collins (aphasia)
MORRIS, Richard. The biography of Leonard Cheshire
RUSHBY-SMITH, Ian. Looking up
SACKS, Oliver. Musicophilia
SACKS, Oliver. The man who mistook his wife for a hat
SOUTER, Keith. Understanding and dealing with stroke
Most of our books are available to borrow by signing
them out on the clipboard provided.
Spring 2015, Issue 11
A New Role in the INS Team
Hello, my name is Kara and I am the new Community Support Worker for INS, assisting clients and carers
to take part in community activities in their local area. If you have enjoyed one of the activity groups at
INS, such as the Art group, and would like to find one in your local community to participate in, we can
work together to make this happen. If you are unsure about whether you can access a community activity
because of transport issues, we can help find the best options for you.
with completing her taxicard application, I researched
Here is an example of how I can
crafts groups in her area and worked closely with her
work with you. Jane has had
MS for 10 years which has affected to establish the right type of group for her. As Jane
had not used the taxicard before, she felt nervous
her speech and mobility. She is
about making the journey alone. I accompanied
retired and lives alone, although
her on her first journey to the craft group and I was
she has a supportive daughter
also able to stay for the session. This enabled me
who works full time and lives about five miles away.
to identify any needs that she might have whilst in
Jane had support from the INS clinical team to help
the group. This was also an opportunity to meet the
address a range of different issues, including balance
tutor and ensure that she was well informed of Jane’s
and mobility, fatigue management and techniques
needs. After the first supported session there were
to improve clarity of speech. When Jane wanted to
no concerns raised and she felt confident to use the
attend a group in her local community, but wasn’t
taxicard and was happy with the craft group so she
sure how she would go about this, I visited her at
continued to attend this independently.
home to discuss her interests.
Supporting Jane to make these initial steps has
Jane had great motivation but lacked the confidence
increased her confidence and helped her to feel less
to be in a group away from INS. She has a passion
isolated because she now feels able to get out and
for crafts and gardening but felt that with her
condition she would not function well in a community join in local activities. It’s all part of the job!
environment. My role was to support Jane so I assisted Kara Dunn, Community Support Worker
Newly diagnosed with Parkinson’s Disease?
Try dance and bicycling!
We have been running a group with Hounslow Community Neuro Rehab Team (CNRT) for clients newly
diagnosed with Parkinson’s. The aim is to introduce clients to different types of exercise and encourage
them to continue with something they enjoy long term in order to better manage their condition.
centre to introduce them to the gym (which was quite
In the gym at INS, we have looked at posture and
a daunting place for some of the group) and let them
exercises to improve trunk stiffness; we have worked
try out the equipment. For those that were interested,
on the Wii balance board to improve balance and
we were able to refer them for ‘gym on prescription’
movement, and have been using bikes for fast
– a scheme where GPs can prescribe a 10 week course
cycling. All of these are activities that people can
of exercise with a personal trainer at a gym for people
carry on at home.
with certain health conditions.
We have taken the group out Nordic Walking, which
We have also involved Kara (our new Community
is not only good for cardiovascular fitness, but also
Support Worker), to help with the practicalities of
encourages longer, bigger steps which benefits
accessing any of the activities, from finding local
people with Parkinson’s. We hope to run Nordic
walking groups over the summer, and there are plenty activities to getting there on public transport.
of other such groups across the boroughs.
Overall, the group has been really successful in
We have had a session with BalletBoyz at INS who run encouraging activity and introducing new ways of
exercising. We plan to follow-up with the group in a
a ‘Parkinson’s Can Dance’ class in Kingston. Research
few months to see how they are getting on. It has
has found that dance improves balance and walking
been great to work collaboratively with CNRT and to
as well as quality of life in Parkinson’s. There are
be involved with getting clients into good habits early.
plenty of classes to choose from locally too!
Finally, we have taken the group to a local leisure
Jo Jethwa, Senior Physiotherapist
7
Spring 2015, Issue 11
INS People – Julie and John Thompson Dates for your Diary
The story of the Thompsons, a
couple living in Twickenham and
married for 56 years, is a great
example of how INS can assist
both individuals and couples
deal with neurological
challenges. Johnny, aged 78,
a former fitter on the railways
for 27 years, had the frightening experience of a stroke while
driving his car in Whitton in 2011. As part of the medical followup investigations following his stroke, he was diagnosed with
Parkinson’s disease. Julie is 75 and has had MS for almost 30 years.
As a consequence, she has balance problems, sleeplessness and
attacks of paresthesia or numbness, which sometimes affects
people with MS. Numbness does not sound too bad an issue but,
in practice, it can cause persistent pain and interference with the
ability to perform relatively simple tasks such as cooking.
Both are enthusiastic users of INS services. Johnny gains from the
Parkinson’s group physio sessions, the memory class and summer
gardening activity and both of them have benefitted from the
gardening club, coach outings and the boat trips. For her part, Julie
has enjoyed the hydrotherapy sessions and occasional activities
such as the Christmas card making sessions. Their aim is to stay
as fit as possible so that they can continue to enjoy their three
children – one of whom lives at home , two grandchildren and five
great-grandchildren. Julie and Johnny are fulsome in their praise
of INS. “They are highly professional and we can’t thank them
enough”. Any problems? “No, we can’t fault them”. At that point your
correspondent felt it prudent to leave these two INS-happy punters
and to reflect that, when times are hard, having an organisation like
INS at hand can do much to make mental and physical challenges
just a bit more tolerable. John Green
28 Apr Lecture at St. Paul’s School
Barnes with Dame Tanni Grey
Thompson, bar opens 6.00pm.
Lecture starts 7.30pm
31 May Garden Party at Trumpeters’,
Richmond Green, 2.00-5.00pm
21 Jun Midsummer Concert, St Peter’s
Church, Petersham, from 6pm
Bridge Night
Our Founder and President, Ellie Kinnear,
held her annual Bridge Night at Barnes
Green Centre on 22 March with a full
house
of 17
tables of
players.
Many
thanks
as ever
to Mark
Hopkins for his expert direction of the
evening, to the supporting volunteers’
and to all those who attended. This year
we raised £1,700.
Over the past year we have had two
‘bucket collections’ outside M&S in
Kew, which have raised over £1,800.
We are most grateful to the volunteers,
including clients and carers, who support
these low-key but valuable fundraising
activities.
INS
INS is a local charity providing long-term support for people with neurological conditions , and their
carers, across Hounslow and Richmond Boroughs. Our aim is to help people to remain independent,
achieve the best possible quality of life and enable them to play an active part in their local community. We provide
ongoing rehabilitation and support for our clients through therapy and education, together with practical self help
techniques and solutions. INS achieves this through integrated programmes, offered in groups or on an individual
basis and tailored to each person’s needs. Our services are delivered by specialist physiotherapists, occupational
therapists, speech therapists, social workers, community support workers and rehabilitation assistants. INS support
typically takes over once people have finished an initial NHS treatment.
If you enjoy reading our newsletter, maybe you would feel inspired to contribute to our next issue.
We also value any feedback, so please do get in touch on 020 8755 4000 or email us at [email protected]
Disclaimer: Although INS checks all information carefully, it cannot accept legal liability for any inaccuracy or omission. INS does not
recommend any product or service and the views expressed in the articles do not necessarily represent the views of the organisation.
Editorial team: Sara Challice, John Green, Ann Bond and Belinda Canosa.
Integrated Neurological Services
82 Hampton Road, Twickenham TW2 5QS • Tel 020 8755 4000 • www.ins.org.uk
Registered Charity No: 1107273 Limited Company No: 5292539
ISO 9001
Registered Firm
International
Accreditation Board
Certificate No. GB2003688
Registration No. 0044/1