CP and strokes -more information needed! Anyone else had one?

DavidOnline

Hi everyone. I had a stroke in August which made my symptoms of cerebral palsy worse. Has anybody else experienced this? I was wondering what the prospects of recovery and rehab are. I did find a research paper which is based on research in Taiwan. It says that people with CP are twice as likely to have a stroke. Both are neurological conditions. I would like to find someone with specialist knowledge of this area. Does anybody know of someone?

Libby_Alumni

Good morning @DavidOnline  

How are you today?

I'm so sorry to hear that you had a stroke in August, I can imagine that was a frightening time for you. Although I don't have experience of cerebral palsy myself, it might be worthwhile speaking to your specialist/GP about your concerns or queries, just so they can offer their professional opinion too. Do you have a good medical support team in place?

I will also move your comment to our specific cerebral palsy category, in the hope that others will be able to share any similar experiences that they might have had/or are currently having. 

I hope that helps and please don't hesitate to get in touch if you have any other questions for us

Libby

DavidOnline

I will request my GP to give me specialist help. Because they are General practitioners they have not enough specialist knowledge in fact no knowledge of CP. Nor have any of the physiotherapists to whom I have been referred. I have found a private somebody with expertise in tai Chi martial arts and stroke rehabilitation who is happy to learn about CP. He conducts sessions on zoom. But if anyone can recommend anybody I would be very grateful. I am considering suing my GP for clinical negligence because I presented my symptoms before the stroke and they were not recognised

Libby_Alumni

DavidOnline said:

I will request my GP to give me specialist help. Because they are General practitioners they have not enough specialist knowledge in fact no knowledge of CP. Nor have any of the physiotherapists to whom I have been referred. I have found a private somebody with expertise in tai Chi martial arts and stroke rehabilitation who is happy to learn about CP. He conducts sessions on zoom. But if anyone can recommend anybody I would be very grateful. I am considering suing my GP for clinical negligence because I presented my symptoms before the stroke and they were not recognised

I understand that it's difficult to find practitioners who are specialised in certain conditions. I had to do a lot of research myself for my condition of Endometriosis and find a surgeon who was skilled in that particular field etc, so it's really great that you're doing the same and conducting your own research and being proactive with this     

Hopefully, some of our other members will be able to offer their experiences/advice and will have some suggestions for you too!

DavidOnline

I do think that Scope ought to keep a register of experts. It is one of the most common questions people ask. I also think it should conduct or commission research into cerebral palsy just as other charities for particular conditions do for their conditions.

Richard_Scope

Hi @DavidOnline
Really interesting post. I do know that Stroke rehabilitation services and methods are beneficial to people like us living with CP. The key is having an open-minded GP, that will refer to these services. It is not really a question that is asked an awful lot. Strokes by and large depend on other factors, lifestyle, underlying circulatory issues.
Any further neurological incident, like a stroke, will have an effect on your CP.

Here is a directory of medical professionals that might help:

Hospital	Name of Clinician	Specialism	Team	Contact Details
National Hospital of Neurology & Neurosurgery, London	Dr Val Stevenson Honey Padillo	Neurology Nursing	Spasticity Clinic CP Nurse	val.stevenson1@nhs.net h.padilla@nhs.net
Royal National Orthopaedic Hospital, London	Mr Tahir Khan Mr Hashimi Nejad Ms Debbie Eastwood	Orthopaedics Orthopaedics Orthopaedics	Lead - Young Adult CP service Young Adult Hips Paediatrics	Jacqueline.Flavell@rnoh.nhs.uk rnoh.nejad.secretary@nhs.net Elise.Spicer@rnoh.nhs.uk
Chelsea & Westminster Hospital, London	Anne Mcnee	Physiotherapy	Orthopaedic-Neurology.	Anne.McNee@chelwest.nhs.uk
St Georges Hospital, London	Dr Catherine Dalton Dr Alessia Saverino Claire Ward	Rehabilitation Medicine Consultant Rehabilitation Medicine Consultant Physiotherapy	Spasticity Clinic Spasticity Clinic Neurology / Community	Catherine.dalton@stgeorges.nhs.uk Alessia.Saverino@stgeorges.nhs.uk Claire.Ward@stgeorges.nhs.uk
Guys & St Thomas’s Hospital, London	Mr Marcus Banks	Orthopaedics	Adult Hips	Wendy Lee sec: 020 7188 4474
Bobath Centre	Madeleine Cassidy	Physiotherapy	CP Centre	madeleine.cassidy@bobath.org.uk
Nuffield Orthopeadic Centre, Oxford	Mr Tim Theologis	Orthopaedics	Special interest in Cerebral Palsy	tim.theologis@nuffieldhealth.com
University Hospital , Bristol	Mr Guy Atherton	Orthopaedics	Special interest in Cerebral Palsy	guy.atherton@uhbristol.nhs.uk
Robert Jones & Agnes Hunt Hospital, Oswestry	Mr Andrew Roberts	Orthopaedics	Special interest in Cerebral Palsy	andrew.roberts@rjah.nhs.uk

Professional Bodies & Charities

Name	Website	Email	Contact No.
Royal College of Surgeons	www.rcseng.ac.uk	reception@rcseng.ac.uk	020 7405 3474
Chartered Society of Physiotherapists (CSP)	www.csp.org.uk		0207 306 6666
Association of Physiotherapists in Neurology (ACPIN)	http://www.acpin.net/
Royal College of Speech and Language Therapsits (RCSLT)	http://www.rcslt.org/		0207 371 3012
Association of Speech & Language Therapists in Independent practice (ASLTIP)	http://www.helpwithtalking.com/	office@helpwithtalking.com	0203 002 3704
Royal College of Occupational Therapy	http://www.rcotss-ip.org.uk/	hello@rcot.co.uk	0207 357 6480
Royal College of Nursing (RCN)	http://www.rcn.org.uk/		020 7409 3333 0345 772 6100
British Association of Prothetists or Orthotists (BAPO)	http://www.bapo.com/	enquiries@bapo.com	0141 561 7217