Calling Birdshotters in South Africa

We have a member based in Capetown who  would like to be in touch with others in South Africa who have Birdshot so that you can share your local knowledge and  experience of treatment etc.

If you would like to be put in touch with this Birdshotter, please email us let us  and we will be pleased to put you in touch.

Thank you

Annie for the Birdshot Team

 

Local PINGU meeting 2nd October 2012 – Birmingham

Consultants Alastair Denniston and Professor Phil Murray with Research Nurse Sue Southworth from Birmingham, have recently established a local uveitis group,  called PINGU. In case you wonder, PINGU stands for Patient Involvement Group for Uveitis.   What a great name!  A few of our members may already come across this  Birmingham Midland Eye Centre initiative.

The next meeting will be held on Tuesday 2nd October at 7.00 and the focus will be “What is uveitis and how can we find out more?”  This is their 2nd meeting and if things go well they plan to meet every 6 months.

By attending these meetings you will get more involved in your treatment at Birmingham and help clinicians there provide better services to you. Everyone with Uveitis including Birdshot Uveitis are welcome to attend,  but please drop us an email and let us know and we will pass on your contact details to Sue Southworth from Birmingham so that the team know in advance the likely numbers.   For further information you can also contact Sue direct by email: sue.southworth@nhs.net.

Nick Bucknall, one of our active BUS members has been involved in helping the Birmingham consultants set this local meeting up and he will very pleased to meet other members of BUS in October.

The meeting will be held at the Birmingham Midland Eye Centre.

 

Next SE/London Meeting – June 9th 2012 with exciting new research update!

The next meeting for Birdshot Friends in the London/SE area will be held on Saturday 9th June, from 10.30am – 1.00pm at St Thomas’s Hospital, Westminster Bridge Road, London SE1 7EH.

The meeting will take place in South Wing Lecture Theatre on the Ground Floor, near to the eye department. We might even go for lunch afterwards!

Joining us will be Professor Glen Jeffrey who has some new research to share with us and who is asking for our help – very exciting!!

There will also be some other guests on the day – watch this space!! – and plenty of opportunity to chat and catch up on all things Birdshot!

Everyone is welcome! If you are planning to come along please do e mail us at southeast@birdshot.org.uk

We look forward to seeing you there!

South East Team x

Birdshot local meeting in Market Rasen

The 1st Birdshot local meeting in the Lincolnshire area is going to take place on Saturday 11th February.    Market Rasen is a small market town on the edge of the Lincolnshire Wolds.  The town lies on the main road between Lincoln and Grimsby, the A46.   The informal meet-up is going to be held at the Red Lion from midday,  and will give people with Birdshot the opportunity to meet others with the condition in their local area.

We know of at least 4 members attending so far, and if anyone else with Birdshot lives close by and would like to link up with this group, please let SueB know on sue@birdshot. org. uk or email BUS on our usual email address and we will be pleased to pass on your details to SueB who is organising this meet-up in Lincolnshire.

This is a great local initiative and we are delighted that Sue has managed to organise this for BUS.

London/SE Birdshot Friends First Meeting

Last Saturday we had the first meeting of London/SE Birdshot friends and 18 people attended including some friends only recently diagnosed.

We spent a lot of time talking, exchanging experiences and debating ideas, and eating sandwiches and cake!

Some of the main points to come out of the meeting were:

  • Carrot Walk – we need 30 volunteers to join the Fight for Sight Carrot Walk to help us raise funds for research.
  •  Vitamin D – some friends reporting positive results from taking Vitamin D.
  •  High Street Opticians – identified by many friends as being a week link in the chain of diagnosis which can delay treatment. We are looking to find ways to improve the education of opticians.
  •  Volunteers to help educate medical staff identify Birdshot – we are going to compile a register of Birdshot Friends who would be willing to volunteer to let medical staff examine their eyes to familiarise them with Birdshot as and when required. Please let us know if you would be willing.
  • Volunteers to accompany patients to appointments at Moorfields – Appointments can be quite daunting on your own when you are first diagnosed with Birdshot.   We’d like to build up a register of  anyone willing to accompany newly diagnosed patients.  We have had a few offers from people willing  to do this already.  Do please get in touch with us if you would like to help new diagnosed people in this way.
  • Volunteers for Hypnotherapy sessions – Lorraine is doing a degree in Hypnotherapy and would like volunteers for case studies, others on her course would also be keen for volunteers across London & SE. Hypnotherapy is well known for helping stress and so could help all of us! Please e mail BUS if you would like to be involved and we will pass on your details to her.

The next meeting will be in June and we will let you know more details nearer the time and hope even more Birdshot friends will be able to attend.

London/SE Meeting 21st January – more details!

Happy New Year! We hope you had a good festive season.

We are looking forward to seeing everyone on 21st January from 1.30pm at St John’s Hall, New North Road, London N1 6JB. We will be providing tea, coffee and biscuits.

Sandra has very kindly worked out directions to the hall:

 From Old Street Station  10 min walk

  • Exit one, go up stairs to the right and stay on that side and keep going straight.
  • First sign you will see is Brunswick Place  carry on past and you will pass the Premier Inn
  • Next sign Chart Street,  on left side of road you will see City College,
  • Next sign Haberdasher Estate also there is a Barclays Bike station and a Tesco Express.
  • Then you will see a set of traffic lights and a green coloured shop on corner
  • Look to your left and there is a GREEN HUT and Barclays Bike Station
  • The GREEN HUT is St John’s Hall

From Moorfields Main Entrance  7 min walk

  • Go Right towards Old Street Station
  • At first set of traffic lights cross and go down Provest Street, there is a bus stop from which St John’s Hall is one stop
  • or carry on walking and follow the road round into Vestry Road, near the top of road on left  you will see Nile Street Dentist
  • At top of the road turn left into East Road, you will see Tesco Express and a set of traffic lights with a green coloured shop on corner.
  • Cross at lights and straight in front you is a GREEN HUT and Barclays Bike Station
  • The GREEN HUT is St Johns Hall

From  Moorfields Main Entrance  7 min walk

  • Go left towards Angel, cross the road at the traffic lights, there is a cafe on the corner.
  • Turn into Sheppness Walk, from here you can either:
  • Get 394 bus from the stop opposite the police station to Minton Street which  is about 5 bus stops.
  • Get off the bus at Minton Street and go right past the Beehive Pub.
  • In front of you is a green coloured shop, turn left just before the shop and you will see a GREEN HUT and Barclays Bike Station
  • The GREEN HUT is St Johns Hall

OR

  • Walk up to traffic lights, turn left into Murrey Grove, half way down there are some shops.
  • At traffic lights at end of road look straight across and you will see GREEN HUT and Barclays Bike Station
  • The GREEN HUT is St Johns Hall

If you are definitely planning on coming on the 21st please could you reply “yes” to southeast@birdshot.org.uk so that we have an idea of numbers and please could you also let us know if you are travelling from Kent.

If you need any further information please do not hesitate to contact us, we hope to see everyone on the 21st.

Kind regards

 

Sue, Sandra & Lesley.

Date confirmed for 1st London/SE Birdshot friends meeting!

Thank you to those of you in the London/SE area who have already expressed an interest in meeting up – everyone is welcome!

We are pleased to confirm that the 1st meeting for Birdshot friends in the London/SE area will be on Saturday 21st January from 1.30pm at St John’s Hall, New North Road, London N1 which is close to Moorfields.

Further information will be provided nearer the time but please keep the date free in your diary.

If you let us know from where you will be travelling we will try to advise the easiest route.

We look forward to meeting you there!

 

 

Educational Support Day – Manchester 9th November 2011

Here are the details of a local meeting that Adrian Brooks is organising in Manchester.  We thought that some of our Birdshot members might like to go along and meet up with others in the area.  Adrian’s meeting is intended for glaucoma sufferers, so parts of it may not appear to be totally relevant to you at this moment, but some of the issues that may concern many members will be covered. It all depends on where you are with your Birdshot  journey.

Please do get in touch with Adrian to let him know if you would like to attend because he will need to have some idea about how many people will be coming.

Thank you so much Adrian for extending this invitation to our members.

Annie and Rea

Wednesday 9th November

  At:  The Boardroom at Henshaws, Old Trafford, Manchester M16 0GS

11.00pm: Coffee and Introduction – Adrian Brooks

11.30am : Instilling Eye drops – Discussion

12.00am : Preventing Falls

Mr Donal O’Connor Clinical Exercise Specialist

1.00 – 2.00pm: Lunch “Hot pot” or Sandwich selection

2.00pm: Legal issues of Visual Impairment

Mr Stephen McCann & Ms. Caroline Pinney, Solicitors

3.30pm Meeting Close

  • Don O’Connor, is experienced at working in healthcare as a clinical exercise specialist. He has enabled many people to improve mobility simply and safely.
  • Stephen McCann and Caroline Pinney work as solicitors and specialize in legal issues of older people and those with long term conditions.
  • Adrian Brooks leads the Glaucoma group at Henshaws

We are grateful to Henshaws for supporting all meeting costs.

Adrian Brooks        Telephone : 07925 962 184

Calling all South-East/London based Birdshot Friends!

A number of us met up recently to discuss the forthcoming Birdshot Day and we all found it so useful to be able to talk with other people with the disease and swop experiences and advice that we’ve decided to set up a local group for those around the London area. The first meeting is planned for a Saturday at the end January/early February 2012 somewhere near to Moorfields. Date and venue to be confirmed nearer the time but if you are keen to attend please e mail us at southeast@birdshot.org.uk. We look forward to seeing you there!”

 

Sue, Lesley and Sandra