Assistance in the London Borough of Havering

[Embeleena]

Hello there I am new to the forum. My mum has lymphoedema in both legs. She used to get care and compression bands he assistance via a hospice befor they shut the dept down.

Currently she cannot leave the house and I was wondering if anyone knows of a clinic that does home visits?

Her confidence has gone in leaving the house and she feels that each time she tries to find assistance online she cannot.

Any advice is very gratefully appreciated, thank you.

[Lynora]

Has she contacted the LSN? They may know of a service in the community - some District Nurses will help. - otherwise it may need to be an independent therapist (private) who will home visit. A list of qualified therapists can be found here mlduk.org

[warren20]

The LSN might be able to help you - Lymphoedema Support Network. Annual membership £15 per year. Tel [phone]. I have joined and they have sent me useful info. A lot depends on your mother's age. The situation is appalling and getting a home nurse could prove very difficult. Council's must provide adequate services for elderly people. I cannot get a nurse to come to me even though the doctor's surgery is 200 yards from my flat door!! However, I have an appointment at a proper clinic AT LAST, but you would have to get this info. from the LSN. They are marvellous and I had to insist that my GP recommend me to the clinic. She may have to take taxis but health comes first.

[Butterfly-lady]

Hi there

I am sorry to hear of your mother's situation and that she is unable to leave the house, this can become very depressing in itself. As Lynora has already said, the Lymphoedena Support Network is your first port of call, to try to find your nearest treatment centre.

I have non-cancer related Lymphodema and am currently having to use a private MLD practitioner for Manual Lymphatic Drainage and she is very good. This, however, is only one part of the recommended treatment for Lymphoedema, as you may already be aware. See:-

nhs.uk/Conditions/Lymphoede... details of Complex Decongestive Therapy (CDT)

I am currently battling with my local Clinical Commissioning Group to get my CDT treatment on the NHS. They had previously stated at two separate public meetings, their own meeting and that of Reading council, Health and Well-being Board, that there is no evidence that CDT is beneficial and is therefore not cost effective, so cannot be made available to me.

Last week however, I was made aware that the CDT that is being given to patients with cancer related Lymphodema, only a mile from my home and where I was turned down for treatment in July, because my Lymphoedema was caused as a known side-effect of a prescribed medication and not by treatment for cancer, was and is being commissioned by the same CCG that said it was not proven to be beneficial. Fortunately, MP and the Health and Wellbeing Board are being very supportive to me in this.

I would suggest that if you have any difficulty accessing the appropriate treatment on the NHS, that she or you, write to your local MP and then get an appointment at his or her surgery so that they can take up your case with your CCG. Your mother should not have to pay privately, I am only doing that as an interim measure, until my case is sorted out. Your local council should have a Health and Well-being Board that monitors the health provision in your area. They are a fairly recent part of the council structure.

The LSN have supplied me with template letters to write to the MP and CCG with regard to provision of care, these letters were part of an LSN Advocacy pack as I am now, actively campaigning on behalf of myself and everyone to try to get a better Lymphoedema service. I have scanned the letters into my computer and if you email me I can email them back as an attachment. You can of course call LSN for a pack or hard copy of the template letters.

My email is [e-mail]

Coincidentally, I worked for a twelve month contract for Romford Citizens Advice Bureau, one of several CABs in Havering, some years ago now, as a home visiting Welfare Rights Adviser. They appear to currently have bureaux in Romford, Hornchurch Library, Harold Hill Library and South Hornchurch Library see:-

haveringcab.org.uk/Internet...

for contact details, it might be useful for you to see an adviser at whichever on is nearest you, they may be able to help, or suggest some other way, I have not thought of. They have a brilliant electronic information system, which is constantly being updated and enlarged.

Hope this is some help

warm regards

Susan

[galtyboi]

She needs to see her Gp and ask to be referred to a lymphedema clinic where she can be monitored and measured for her compression garments.I know how she feels and what she is going through.I have lymphedema in both legs which cause swelling in my feet ,which makes it hard to find shoes,as not many shoe manufacturers make shoes for people with this complaint so I end up staying at home all the time ,and I am sentenced to a life of wearing tracksuit bottoms because they have wider legs and are more comfortable to wear .You mom is not alone ,with the help of a good Gp and a good lymphedema clinic in a hospital where she can e measured for her compression garments,and be looked after by people who are trained to deal with this complaint,she will make it a lot easier on herself.There is help out there and I hope with the help of her GP she will find it.she is not alone,let us know how she gets on ,we are with her all the way,good luck.

Galtyboi.

[Athinakay]

Check at mlduk.org.uk/ for local therapists, lymphatic drainage massage will do her wonders. If she has advanced lymphedema ( settled and hard ) then she could try HIVAMAT massage therapy, it works even on older hardened lymphedema. Going on the MLD therapists link, I found a Diane Huggins tel [phone] and 07881552861 in Brentwood brentwood-clinic.co.uk/mld.htm also, you could check with any of the cancer charities that offer MLD, not sure who is in your area but there has to be a macmillan, haven, or similar in the area. It would be quite hard to find a clinic doing home visits as those which offer massage are usually charities working in a centre. Best of luck!