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Network Club

Network Club - 24th April 2015

Topic: Baclofen

Chairing by: Mandy Robinson

Agenda:

 

Highlights for discussion

10:30

Registration/Tea & Coffee

• Welcome and introduction

10:45

MS Talk: Baclofen treatment

• MS talk: Baclofen

11:00

Teleconference – 14/03/2015

• Health Watch

11:10

E-bulletin

• Nutrition & Wellbeing Programme – Tola Kolawole

11:15

Drop-in sessions. What is the preference?

• Health & Wellbeing

11:25

Health Watch

 

 

11:30

TSP West London

 

 

11:40

Caribbean Plaza – 04/05/2015

 

11:45

Nutrition & Wellbeing – Tola

 

12:45

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 spoke about making their MS easier to manage in the future. Having recently moved to a new home the front door was easy to access, and the internal doors could be widened for a wheelchair. A member had difficult opening their eyes and placed a hot towel over them which helped to open them. The Volunteer Coordinator reported doctors were looking into medication for Parkinson’s disease that might be used to treat MS. Research conducted to realign the jaw line could be beneficial for MS sufferers but no confirmation has yet been given by the MS Society.

Member - Brian Belle-Fortune – Intrathecol Baclofen Treatment

The National Hospital led the Baclofen pump procedure to reduce spasticity in MS.

The procedure consists of a pump and a small tube:

- A pump is placed under the skin in the lower abdomen
- The pump stores and delivers a small amount of the drug through a tube into the spinal fluid. The drug travels through the nerves into the legs.
- Reduces stiffness and allows muscle movement.

Teleconference– 14/03/2015

The Teleconference did not go ahead, as planned on Friday evening. Karlene Rickard apologises but an appointment which finished late meant the Teleconference had started when she arrived home. An email will be sent to members for the next session.

E-bulletin

The Chair discussed the possibility of problems with printing the E-bulletin. The majority of members were not aware of the E-bulletin being available to view on TSP web page and had not looked. Some people had requested to have the E-bulletin printed but due to lack of funds and affordability it was not possible. The Chair encouraged members to look at the TSP website which is updated regularly and has some valuable information which members may find interesting.

Drop-in session

The Volunteer Coordinator asked members to consider what their preference was toward having other drop-in sessions apart from the monthly NWC. The following was suggested:

- Housing

A Steering Group was discussed at last month’s NWC which would be an opportunity to discuss the importance of the ideas beneficial to supporting TSP. The Volunteer Coordinator suggested the Steering Group could be managed over the phone after the Teleconference session finished which the members agreed to.

Health Watch

The MS concerns raised by Lorna:

- Unsatisfactory wait time before the patient is diagnosed for MS even when in acute pain. When the patient was transferred to the RFH the care was better.

- A particular doctor in NMUH who deals with MS shows a lack of compassion and understanding for a patient’s condition.

- Patients having to wait a long time in A&E even when in need of urgent care related to their MS condition.

- Complaints concerning operations being cancelled also the length of time before a date is being given for a variety of operations. Also GP’s have sent letters of concern.

Feedback from the medical team and the service manager:

The waiting time for diagnosis will vary dependent on symptoms and diagnostic tests.

Another consultant has been brought in to support the patient load and waiting times.

The expectations of patients will vary as some expect diagnostics, diagnosis and treatment all on 1 day.

Care at RFH is not better but more advanced as they have more MS specialists and are a large Tertiary service while North Middlesex is a DGH.

I cannot answer on behalf of A&E other than

Patient arrives at A&E and be admitted under medics

- A referral is made to the Neurology team to prompt the time for the patient to see a Neurologist on the ward.

- Neurologists cannot see every patient in A&E as the Consultants are doing clinics and ward referrals. North Middlesex do not have a Neurology Registrars.

TSP – West London

The Volunteer Coordinator reported the West London - Pepper Pot - Shane Project presentation had been a success. Having more session was planned.

Caribbean plaza – 04/05/2015

A Family Fun Day for all with lots of activities and events worth visiting.

Quiz Night – 26th September 2015

Members were reminded the Quiz Night would be printed on the Agenda monthly.

Speaker – Tola Kolawole – Nutrition & Wellbeing

At the beginning of the session questionnaires were handed out and help was offered to those who needed to fill it out.

Tola spoke about eating a balanced healthy diet to include a variety of food to give the right amount of energy and to reduce risk of diseases. The food is divided up into the right proportions to include 5 food groups necessary to provide the nutrients for a balanced diet.

AOB

The Volunteer Coordinator asked the members to spend a few minutes of their time to complete TSP Health and Wellbeing Workshop survey as feedback on how satisfied they were with the workshop session.

 

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