Viewing 15 posts - 1 through 15 (of 15 total)
  • #158654
    South East Care Pathway Co-Ordinator.

    Hi Everyone,

    Could someone tell me who is the Neuromuscular Care Pathway Co-ordinator & Patient Advocate for the South East please. It used to be Neeru Malhotra and then Pammy Malhotra, but I have no idea who it is now.

    I need to get their advice and support on something.

    Thank you,

    Liam.

    Liam47
    Participant
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    Joined: 13/04/2018
    #158667
    Reply To: South East Care Pathway Co-Ordinator.

    Care Advisors and Clinical Nurse Specialists

    Andrea Russell – Paediatric and Adult Neuromuscular Care Advisor covering Norfolk and Suffolk, based in Cambridge.

    Addenbrookes Hospital, Hills Road, Cambridge, CB2 0QQ

    E-mail: andrea.russellscg@nhs.net

    Tel: 01223 349815

    Carol Wood – Paediatric and Adult Neuromuscular Care Advisor covering Cambridgeshire and Essex, based in Cambridge.

    Addenbrookes Hospital, Hills Road, Cambridge, CB2 0QQ

    E-mail: Carolann.wood@nhs.net

    Tel: 01223 349815

    Andy Rose – Adult and paediatric Neuromuscular Care Advisor covering Hertfordshire, Bedfordshire and Peterborough.

    Addenbrookes Hospital, Hills Road, Cambridge, CB2 0QQ.

    E-mail: andy.rose1@nhs.net

    Tel: 01223 349815

    Joanna Musson – Paediatric Specialist Nurse based at Addenbrooks hospital, Cambridge.

    Addenbrookes Hospital, Hills Road, Cambridge, CB2 0QQ.

    E-mail: joanna.musson@addenbrookes.nhs.uk

    Tel: 01223 216662

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
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    Posts: 1,002
    Joined: 20/09/2010
    #158668
    Reply To: South East Care Pathway Co-Ordinator.

    Not sure if Oxford would be closer my geography not great lol

    Heather Ryan – Regional Care Advisor based in Oxford, can cover appointments with adults only, available on Mondays, Wednesdays and Fridays.

    Dept Of Clinical Neurology, Level 3, West Wing, John Radcliffe Hospital, Headley Way, Headington, Oxford OX3 9DU (covers Oxford, Bucks, Berks & Northants.

    E-mail: Heather.Ryan@ouh.nhs.uk

    Tel: 01865 234221

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
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    Posts: 1,002
    Joined: 20/09/2010
    #158693
    Reply To: South East Care Pathway Co-Ordinator.

    Just to add to catatude’s post, we don’t have a care adviser in the South East at the moment. It is something that is being campaigned for behind the scenes. There are some advisers based at London hospitals from what I can see. It is not ideal.

    There is a Muscle Group for the South East, one meets in Ashford and another in Crawley. Details here

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
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    Posts: 2,246
    Joined: 05/03/2015
    #158706
    Reply To: South East Care Pathway Co-Ordinator.

    I also have Rigid Spine MD specific fault on SPN1 gene.

    Happy to brainstorm on any issues till you find a care adviser, not all that many of us.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #158859
    Reply To: South East Care Pathway Co-Ordinator.

    I also have Rigid Spine MD specific fault on SPN1 gene.

    Happy to brainstorm on any issues till you find a care adviser, not all that many of us.

    Hi Catatude,

    Same MD as me (a specific fault on the SPN1 gene). I’d be happy to pick your brain cells on any issues I think of to ask, if that’s ok 😉

    I hope you don’t mind me asking you this, but, what benefits do you claim? The reason I ask is, I’ve had to take ill health early retirement from work for several reasons, but one was because of the RSMD getting worse where I was very ill and I was not so mobile after having major heart surgery in July 2017, I’ll get a small pension from work but it won’t be enough to pay all the bills, so I was wondering what I could claim? Hence the reason I asked the question about care pathway co-ordinator in the south east (Kent).

    Thank you,

    Liam.

    Liam47
    Participant
    Posts: 0
    Joined: 13/04/2018
    #158891
    Reply To: South East Care Pathway Co-Ordinator.

    Hi Liam

    At the minute i still work. I claim Dla and Disabled persons tax credit for the 17.5 hours i work. Access to work helps with equipment for the work place.

    You might want to consider Citizen Advice bureau. Top of my head I would imagine:-
    Income support, (this is means tested)
    ESA(think thats universal credit now) .
    Pip (formerly DLA)
    Carers allowance (claimed by the person who helps you about £60 a week but they can only work X amount of hours for another job )

    My local council has a money matters team who can help with whats available.

    cat

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
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    Posts: 1,002
    Joined: 20/09/2010
    #158892
    Reply To: South East Care Pathway Co-Ordinator.

    If your on Facebook there is group specific to our MD of SePN1/RSMD. Mostly American contributors so probably wont get benefit info but some very good condition specific chats etc some interesting research and trials going on

    https://www.facebook.com/groups/SEPN1RSMD/

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
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    Posts: 1,002
    Joined: 20/09/2010
    #158893
    Reply To: South East Care Pathway Co-Ordinator.

    Info below from fellow MOD Sar78

    https://www.disabilityrightsuk.org/universal-credit-uc

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #158910
    Reply To: South East Care Pathway Co-Ordinator.

    Hi Cat,

    Thank you for the advice and links. I shall check them out and apply for some. I shall check out the Facebook group page and probably join.

    How long have you had RSMD? I was officially diagnosed with it just over 5 years but they think I’ve had it for longer.

    Liam.

    Liam47
    Participant
    Posts: 0
    Joined: 13/04/2018
    #158953
    Reply To: South East Care Pathway Co-Ordinator.

    Hello,

    There is unfortunately no South Care Coast care advisor currently. This is something our neuromuscular outreach team are working on with CCG to get roles funded.

    In the mean time I would encourage you to contact one of two places. If you are based at King’s College Hospital for you muscle clinic under either Dr Norwood or Dr Rose then feel free to contact me directly (Joel Rackham) as I work alongside this clinic supporting in a similar way to Pammy and Neeru have done in the past. My email is j.rackham@musculardystrophyuk.org. Should I be unavailable you can follow advice below as well.

    Alternatively if you are in the South East and do not attend this clinic or are in another area without a care advisor I would encourage you to contact our helpline through either 0800 652 6352 or info@musculardystrophyuk.org. We do have an advocacy team who are able to support with various things, and we always try our best to find any information you may need.

    Kind regards,

    Joel

    JoelR JoelR
    Participant
    Posts: 0
    Joined: 01/12/2015
    #159118
    Reply To: South East Care Pathway Co-Ordinator.

    Hello,

    There is unfortunately no South Care Coast care advisor currently. This is something our neuromuscular outreach team are working on with CCG to get roles funded.

    In the mean time I would encourage you to contact one of two places. If you are based at King’s College Hospital for you muscle clinic under either Dr Norwood or Dr Rose then feel free to contact me directly (Joel Rackham) as I work alongside this clinic supporting in a similar way to Pammy and Neeru have done in the past. My email is j.rackham@musculardystrophyuk.org. Should I be unavailable you can follow advice below as well.

    Alternatively if you are in the South East and do not attend this clinic or are in another area without a care advisor I would encourage you to contact our helpline through either 0800 652 6352 or info@musculardystrophyuk.org. We do have an advocacy team who are able to support with various things, and we always try our best to find any information you may need.

    Kind regards,

    Joel

    Hi Joel,

    I’m not based at Kings for a muscle clinic. Although I live in north Kent, most of my care is at Addenbrooke’s Hospital in Cambridge for various health problems, one for which I’m under a neuromuscular disease consultant at Addenbrooke’s. I did see a neuromuscular Physiotherapist at Kings which was the closest neuromuscular physiotherapist in my area.

    But, thank you for your valuable advice and help, I appreciate it and I will keep what you said in mind.!

    Kind Regards,

    Liam.

    Liam47
    Participant
    Posts: 0
    Joined: 13/04/2018
    #159146
    Reply To: South East Care Pathway Co-Ordinator.

    Hi Liam

    I was diagnosed with an MD around age 8. Although symptoms apparent earlier. Finally properly diagnosed with RSMD within the last ten years. Was only with more modern testing could they pin point the SEPN1

    Hi Cat,

    Thank you for the advice and links. I shall check them out and apply for some. I shall check out the Facebook group page and probably join.

    How long have you had RSMD? I was officially diagnosed with it just over 5 years but they think I’ve had it for longer.

    Liam.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #159258
    Reply To: South East Care Pathway Co-Ordinator.

    Hi Liam

    I was diagnosed with an MD around age 8. Although symptoms apparent earlier. Finally properly diagnosed with RSMD within the last ten years. Was only with more modern testing could they pin point the SEPN1

    Hi Cat,

    Thank you for the advice and links. I shall check them out and apply for some. I shall check out the Facebook group page and probably join.

    How long have you had RSMD? I was officially diagnosed with it just over 5 years but they think I’ve had it for longer.

    Liam.

    Hi Cat,

    What can you tell me about the RSMD, why did they at the age of 8 think you had MD? What was you like and how are you now? What was the progression of your RSMD?

    Sorry for the straight to the point questions.!

    Thank you,

    Liam.

    Liam47
    Participant
    Posts: 0
    Joined: 13/04/2018
    #159319
    Reply To: South East Care Pathway Co-Ordinator.

    Hi Liam

    Straight to the point fine lol

    In all honestly the signs that I had a neurological muscle condition was apparent from birth as I had respiratory issues. It was supply teacher at my school how recognized that I was using the gower method(using hands to walk up legs to stand from seated on floor) to stand. I was then diagnosed with Scoliosis then tested for the NMD thereafter.

    I have used night time ventilation since 1995 to assist with breathing after entering respiratory distress and increasingly during the day over the last 6-10years.

    I was ambulant till about 6 years ago. I used a scooter since mid 20s till last year when I progressed to using a powerchair that I can drive my car from without the need to transfer.

    My continuing issue and point of decline in my ability to safely perform a independent sit to stand.

    I had and continue to have reduced muscle tone and body fat.

    Apart from above :lol: At 36 I feel relatively healthy with only minor presenting contractors to my joints. And these are at point of previous injury’s.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
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