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Network Club

Network Club - 29th May 2015

Topic: Sickle Cell Anaemia

Chairing by: Andrea Greaves

Agenda:

 

Highlights for discussion

10:30

Registration/Tea & Coffee

• Welcome and introduction

10:45

Light exercise to music/Barbara Downer

• MS talk

10:55

MS Talk

• Steering group

11:00

Steering Group initial meet & greet – (05/05/2015 – feedback)

• Independent Living Fund (Changes)

11:15

Quiz Night – 26th September 2015

 

11:25

Second hand stall – 14/05/2015 –Cancelled - Volunteer request

 

 

11:35

Speaker – Samantha Greaves – Sickle Cell Anaemia

 

 

11:55

Independent Living Fund (Changes)

 

12:10

AOB

 

1:00 pm

Lunch & socialising

 

Venue:

Edmonton Baptist Church, Monmouth Road, N9 0LS

 

 

 

MS talk

Everyone was invited to share information about their MS. A member reported on the merits of the website www.benefitsandwork.co.uk which explains all the questions you may be asked at an assessment. The member was being assessed for Personal Independent Payment (PIP) benefit. Community House also has a drop-in session for advice on benefits and housing issues. A member heard in the news people are being misdiagnosed with MS. A discussion followed about how little is known about the condition MS even by doctors. Putting together a petition as a collective voice to give your local MP Kate was suggested. A member unable to access a lift by wheelchair while using TFL’s transport was not given assistance. However, previously he was given a black cab to continue on his journey.

MS Trust - People with MS:

- Vaccinations e.g. flu jabs are not harmful to people with MS

- Stem Cell Research – media coverage showed success, but what is the truth behind this. Email inforteam@mstrust.org.uk

- Managing cognitive problems – find out more at - stayingsmart.org.uk

- Swallowing – find out more at – mistrust.org.uk/swallowing

- Young Person’s guide to MS age 10-16 years old MS Trust

- New Focus on Progressive MS – visit progressive alliance.org

- Dr Jeremy Chataway leads the research on MS smart trial, Queens Square. If you want to participate visit www.ms-smart.org

- Participants – Be able to walk 20 metres supported by 2 crutches or 500 metres without help Be age 25-65 years old

You cannot take part if you are taking a disease modifying drug or SSRI anti-depressant.
Anyone with any questions concerning TFL London transport can email norma@shaneproject.org.uk she will take it up at their Mobility Forum meeting.

TFL Support Card: What is the travel support card?

The travel support card gets you help when you are travelling in London. You can use it on buses, trams, Docklands Light Railway (DLR), the Tube, London Over ground, London River Services’ boat services and at Victoria Coach Station. You show the card to staff when you need help. Anyone who finds travelling difficult can have a travel support card. You might have a hidden disability or you might not often travel on your own. The card will make travelling easier. Staff will be able to help you more easily. How do I use the card? When you need help or support, you can show your card to any member of transport staff. They all wear uniforms .There is a space on the card to write down anything that could help our staff to give you the support you need. You can also add your name and an emergency contact number. Here are some of the things that staff can do to help you.

- Tell you which platform or bus stop you need to go to for your journey. Show you the way to the right platform or bus stop.
- Help you to plan a new journey if there are delays.
- Make sure you have time to sit down on the bus before it moves off. Help you to get on or off river boats.
- You can book help on
- London Over ground by calling 0343 222 1234
- You can book help at
- Victoria Coach Station by calling
- 020 7027 2520.

Steering group initial meet and greet – (05/05/2015 – feedback)

This group discussed via telephone ideas that could be of help to the NWC members:

- Introduce dancing/music, create little programmes that lifts the mode of the meeting.

Quiz Night – 25th May 2015

Planning for the Quiz Night (QN) is placed on the Agenda each month to remind everyone. Emails were sent to those interested. The first meeting was on 25th May 2015. The meetings are held in the office during working hours due to limited resources but can also be held downstairs. Anyone unable to attend the meetings please email questions to. The following was discussed:

- Volunteers are needed and it is important to be specific and say what volunteering task you want to do. A list of the tasks is being prepared and once it is completed it will be sent out by email to anyone interested. Juanita Downer agreed to deliver some sponsor letters by hand.

2nd hand stall

Due to the rain the stall did not go ahead. Sufficient donations have been given and members were thanked for giving clothes etc.

Sickle cell anaemia – Speaker – Martha Muli

Martha talked about the history of the disorder; the name sickle comes from a farmer’s tool. Sickle cell anaemia is inherited through a defective gene from both parents. It causes anaemia because there are not enough red blood cells and that causes severe pain, fatigue and a lack of energy.

Member – Samantha Greaves -

Samantha developed sickle cell anaemia at 4 years old. She spoke about the disease affecting each individual differently. Sometimes it causes blindness, yellow eyes and a feeling of being drunk. Rather than let the disorder get her down she started having a good balanced diet to help manage the condition. She also started her own business network for which she is chief executive. A bunch of flowers was presented to Martha Muli, a specialist Sickle Cell Nurse. She was thanked by all for her tireless work with this condition. She will be retiring from the NHS but will continue some work voluntarily. She is now being in the process of finding funds which will pay for a “Cleansing Machine” for sickle cell patients which will be given to the North Middlesex Hospital.

Independent Living Fund (ILF

Councils will be taking over the ILF. This will be given via assessment to those entitled. There could be a 5% reduction to those entitled.

Lover’s Rock – Victor Romero Evans – Ashcroft Theatre

This event was discussed at the Enfield Lupus Group. Members from the MS & Lupus group who wishes to attend on preferred dates could make arrangements to hire a minibus. Also, at least two people from their own groups will be able to raise awareness on the night by handing out information and giving a five minute talk about their condition and how it affects them. (Do not forget to wear your organisations T-shirts) One of the members will speak to Barry Swane from Age UK who might be able to drive the minibus. Those going on the night will be asked to contribute towards petrol cost.  

Read more about the Network Club: