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EXPERIENCE OF STAYING AT BURRSWOOD HOSPITAL, KENT

. The Hellyphant is back (!)after 14 nights as an inpatient, and an epic journey back by car. I am resting my body but my mind is full of all the lovely people I met and talked with there.

In short....Burrswood is a wonderful place. :)The setting is in a beautiful landscaped garden, and I had the great pleasure of looking out over the blossom covered tree tops to watch the wild rabbits nibbling on the lawn :) I also saw a green woodpecker.from my window.

The spirit of the place is one of peace, friendliness and kindness ,and I feel so blessed that I could stay there.,
I could not have had more consideration and sensitivity to the needs of an ME patient- even the cleaners were so understanding. ( and counsellor and Drs were happy to break sessions into shorter chunks for pacing). The food was also so yummy, with lots of choice for anyone on a limited diet.

The Doctors and the physiotherapist I saw are expert in dealing with this illness, and going to Burrswood was a unique opportunity to be fully diagnosed and advised on the best way to pace and manage day to day life. My meds and pain relief were also reviewed and it has turned out I am deficient in vitamin D..There is no magic cure for ME,available( FACT!!) so it is really important that we have the tools to create the best quality of life whilst living with it. To have that advise from Doctors who also have a spiritual perspective was also very special for me..(I should also add that I am a committed Christian hellyphant, and that I had asked for that input.)

I attended a healing service there, as well as watching other services via a live- stream from my room!! I found the approach to receiving God's healing to be very in sympathy with my own, and my prayer life feels as if it is blossoming again.

It will take a while to process these last weeks, but my overwhelming feeling, is that to stay there is a unique possibility for those in the UK with ME seeking respite care ( I had 24 hour nursing) and those who could benefit from a team of people working together to help them to manage better. As I am also a part time carer for Mr Hellyphant,as well as a sufferer, it was vital for me to have a real break from cooking, sorting the house etc...and the nurses could not have been more obliging- bringing me tea at 5 am when I couldn't sleep, unpacking my case when I arrived, heating up my heat pads constantly and leaving me alone during designated rest times.

Having worked with so many ME patients, Dr Paul Worthley really understands the challenges of living with ME and for the first time I have felt my chronic pain to be completely understood. It is so healing to be believed and helped with how to be as active as is realistically possible. There is NO concept of pushing people beyond what they can do,. and NO GRADED EXERCISE unless the patient demanded it and the Dr thought it was the preferred plan of action. In fact everyone seemed aware of how harmful this could be. I never felt pushed in any way. On my bad days I cancelled seeing anyone and all of the team deferred to what I judged myself able to do.

My physiotherapist was wonderful and has restored my faith in her profession, (after two very difficult experiences with the NHS Physio service). I had physical exams and intensive questions and then all the medics, counsellor, nurses, chaplain etc could all share my notes, so I did not need to keep repeating myself.

I feel that now I have a comprehensive understanding of what I am dealing with, I have a better chance to change my habits and to pace with greater success. I have also changed my methods of resting and have been shown the best postures and supports to use when resting. They are recommending a community occupational therapist to access my home, and the physio has supported my plan to get a mobiility scooter. These are all things that would have taken a long time to have acted on myself.

It is a private hospital , and therefore not cheap, but there are substantial grants you can apply for. It is a place run and staffed by Christians, but unless you don't like kind and supportive people this would not bother you and patients are under no obligation or pressure to be involved in the spiritual side. They welcome patients of different faiths and those who have none as well as Anglicans etc..

I would urge anyone who has been thinking of going to apply soonest, as there are plans afoot to change the nature of the care that is available for ME patients. I gather there will be changes made in the Autumn.

# Message me if you have any questions.:nerd:

Comments

Thanks for this - ive just looked at it and it looks wonderful - I could really do with a period of peace and quiet and recuperation whilst being looked after. How do you go about accessing grants etc?
 
There may be no magic cure, but Rituximab looks like it might be a non-magical cure in about 1/3 of cases. I think there are other ways to cure the disease too. That doesn´t mean that palliative care is pointless though, especially palliative care that doesn´t make the patient worse.
 
Hi @Justy- it really is a wonderful place.would contact Hannah Clifton at ME Trust. hannah@metrust.org.uk
She is a recovered ME sufferer and will take you through the process. Message me if u need.xx
 
Hello hellytheelephant! I know what you mean, but that Burrswood even exists in our day and age is wonderful. There is no reason for such a place not to exist in Canada. But with political correctness it wouldn't even get a start. I sure wish my daughter could stay there for a bit. She flat on her back and suffering, after coming home last Sunday from her 6 th GI bleed. Seems to have made a severe ME relapse, as it always does.not a physician in sight here to help her. We basically try on our own.
 
@perrier, I do understand your desperation. I was chatting with a Hospital Chaplain a couple of weeks ago about Burrswood,and she asked me if doctors were allowed to pray with you/for you. I confirmed that this is the case, and she told me that in a UK NHS hospital if a nurse prays with a patient ( or wears a cross) it is instant dismissal!

As a Christian with non Christian friends I often find I am asked to pray for them by non believers

I am so sorry to hear about your daughter's relapse- the flat out scenario is a familiar one to me too...!. Sending support and prayers for you both from the soggy UK.
 
AVOID AVOID AVOID
was a regular patient but discharged myself AMA after an awful couple of weeks. They are getting rid of dr Paul from the end of August too
 
Burrswood does not profess to offer cures, but for me it was, until recently a very good place to receive respite care. @BlahBlahBlah sorry you had a really pooor experience.
 

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