Outreach for Families who are Bereaved

How can outreach help?

Our Outreach Team has been working for many years with families and adults affected by SMA. During this time, we have provided emotional support to many families who have been bereaved. This has been by phone, email or a home visit. We don’t provide a counselling service, but talking with people who understand the condition and the care and challenges that a family has been through can be helpful.

I haven’t used your services before, can I still talk with you?

Of course. We are more than willing to talk with you, just contact the office and ask to speak to a member of Support Services.

I think I would prefer a visit to a phone call or email contact, would this be possible?

Yes, some people find it easier to talk face to face. If you would prefer a visit, we’ll arrange this with you as soon as we can, at a date and time that suits you. We work visiting during the day across the UK. If we can’t get to you as soon as you had hoped, we can always email or talk on the phone in the meantime.

I worry I will be upset when I talk to you and I won’t know what to say or ask.

Don’t worry, that’s understandable and we are there to provide emotional support. We will always go at your pace and give you the time you need, whether it’s on the phone or at a visit. Our visits are very informal.

Are there any times when you might not be able to make a visit you have planned?

SMA UK has a very strict policy that if staff are ill, they shouldn’t make visits. This is especially important if the outreach worker is coming down with a cold or flu or has a stomach virus.

If this does happen, we apologise. We will ring you as soon as possible to let you know and do our best to make an alternative arrangement with you.

What if I can’t keep the appointment?

We do understand that you may need to cancel a visit. It’s also fine if you change your mind and would rather speak by phone or email. If this does happen, please contact your outreach worker as soon as possible to let them know - and to make an alternative time if you wish.

Would it be possible to talk to another family bereaved by SMA?

We may be able to put you in touch with one of our volunteers who has experienced the death of a child through SMA.

Some families who have been bereaved by SMA Type 1 have told us that they have found a bereaved parents and grandparents Facebook group helpful. This is a closed group that has been set up by a parent who was bereaved by SMA Type 1. If you search ‘SMA bereavement support’ on Facebook, you will find it.

I’m just so overwhelmed with everything, is there anyone else that can help me?

As well as family, friends and our service, there are other individuals and organisations that can support you. Our information sheet ‘Support if you are Bereaved’ tells you how to contact many of them. 

Will what I talk to you about be kept confidential?

Your personal information will never be disclosed to anyone unless it is necessary as part of our support service. You will always be asked if you agree to this. The only exception is if we are ever concerned that someone is a danger to themselves or others, or we believe a child is at risk of harm. 

We will keep your contact details and any information we need to support you on our secure database. You may ask at any time to see copies of any information we hold about you. We would normally keep your records for seven years in case you decide to come back to us. Please click here for more details.

What else do I need to know before you visit?

This is a UK-wide service, free to all regardless of where you live.

We make our own travel and accommodation arrangements which are funded by SMA UK.

We’re also not able to accept personal gifts. If you wish to support our work you are welcome to make a donation to SMA UK and / or contact our Fundraising Team for ideas on how to raise funds and awareness of the condition.