Support For Brain Tumour Patients: An Interview With Becky Haggar
Malcolm: I'm with Becky Haggar from the Hillingdon Brain Tumor and Injury Group. And I'm interested in learning, Becky, all about the group which I understand you set up some years ago. So how was it formed?
Becky: It was formed in 2009 and it was formed basically [by] my husband and myself.
My husband was diagnosed with a brain tumour but prior to that he'd actually been misdiagnosed. And really through his journey we managed to see where the loopholes were in the services and the providership and how there were really important parts of the journey that were missing for support with the healthcare professionals and within various charities that were around.
Malcolm: So how did you come to sort of grow the charity as it is today, because of course, it began just with you and your husband and now it supports many, many people. So, what does it do on a weekly or daily basis?
Becky: It's incredible really because we provide a support in many different ways and that's how the charity has really grown. And originally when we first started we put one ad in and we didn't really realise the extent of who we was even going to come to us or who was going to actually access us.
And as soon as the one advert went in we ended up having about 10 to 15 brain tumour patients come in on that first meeting. And that showed really the lack of support emotionally. So, we support emotionally, we support mentally, we support physically and we support financially. There's a very large remit.
Malcolm: It is. First of all, I suppose I am interested in how people come to find you? How do they get referred to you by the health services or do they find you through your website?
Becky: Generally, it is through word of mouth website and advertising. We have just started to educate the healthcare professionals. So, we do get some referrals. We still have a long way to go but generally it's literally through desperation. So that person would have been diagnosed with the tumour or an injury and through desperation they go on Google to search to see what support is available and up we pop.
Malcolm: And you're the Hillingdon Brain Tumor and Injury Group, does that mean you just serve Hillingdon residents or do you go wider than that?
Becky: No much wider. We go right across the country and we can support many ways via email, via telephone conversations, the power of technology now enables to do facetime and we will also communicate for them with hospitals across the whole of the world. There were specific patients we've sent across to America.
Malcolm: I know that beyond the initial support. You provide weekly sessions - an opportunity for people to meet and in effect a bit of respite for some individuals and families. So, tell us about some of those activities that you've now developed over a number of years.
Becky: I mean it's a lifeline. It's literally their lifeline. So, when they come to us they normally don't have any help either physically, mentally. So, the support enables them to talk to other people who are in the same position as they are. And when they talk to others they can really get a good guidance that they're not alone. We provide neuropsychology too. So, we also provide counseling, we provide all sorts of different alternative therapies. We actually go into the family which is very different for us as a charity. So, I don't think many charities actually do. We go into the family, we sit with them and we work with them. So, we supply the needs that they require.
Malcolm: Yeah, I think from my experience it’s a much different support group. It's very much hands-on in with the family and supporting them. And I say on a daily basis but continuing to support them and provide them with the necessary aids and advice and of course bringing them along to various events you do. And then you do football as well you do bowls and various activities and what have you.
Becky: Completely. And I think we have the core which exactly what you're saying. We have the core element of the fitness, the group activities, the Neuro-rehabs but on the other side of it we're a charity where the client - whatever they want actually that needs providing. There's some charities just say we provide this, this and this. Whereas what we do is, what we say to the client is - what do you want? What do you need? What's your top priority at the moment? Is it someone to talk to? Is that you need that MRI scan? Is it you that need you know a private appointment with a consultant? And that means the world to them because it's someone that's actually listening to them.
Malcolm: That's excellent. Thank You Becky.
If you or a loved one has been diagnosed with a brain tumour, please contact the charity by visiting: http://hbtg.org.uk/ or Email: firstname.lastname@example.org Phone Becky Haggar: 07769 323142 Phone Maria Penicud: 07933 689123.
To discuss a potential compensation claim for the misdiagnosis and late diagnosis of a brain tumour please contact brain injury lawyer, Malcolm Underhill, via email on email@example.com or phone on 0333 123 9099.