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FAQs

Frequently asked questions:

How likely is it that my child's operation is cancelled?
Unfortunately there are a few reasons why your child's surgery might be postponed, including at short notice. SDR is performed as a routine surgical admission. If an urgent neurosurgical case arises or a bed is not available, SDR cases may need to be cancelled. We appreciate how stressful this can be for the child and the whole family and will always do our best to reschedule as soon as possible. On the day of the surgery you need to call Bed Management to ensure a bed is available. This team can be contacted by calling switchboard on 0117 923 0000 and asking for them to bleep 3217.

How many parents can stay by the bedside?
One parent/carer can sleep in a drop down bed next to their child on the ward. If 2 parents/carers will be present then you will need to arrange your own accommodation for the second parent/carer until your child is discharged and you move to your hospital booked accommodation as a family.   Please contact the family information room if you would like to talk about accommodation options on 0117 342 8065. Hospital visiting hours are limited to 2pm- 8pm for extended family and friends, while open visiting is permitted for immediate family.

Will my child be in pain following the surgery?
Your child will be prescribed regular pain medication following surgery; ibuprofen, paracetamol and gabapentin which is for nerve pain. If you are concerned that they are in pain, please speak to your named nurse.

What is there to keep my child entertained in Hospital?
Whilst an inpatient on the ward, there is a school room which your child will be able to access. There are also 2 play rooms; one on the ward and one just next to it on level 5. There are various computer consoles, games, DVD's and toys that your child can use whilst on the ward. We also have a range of different toys that we use during therapy to help make sessions more fun for your child. Wi-Fi is available free at the hospital.

Is there a Hospital School?
The hospital school is based on level 5 next to our SDR rehab gym. They deliver daily lessons (on weekdays during term time) both in the school room and around the hospital. Siblings of children from outside of Bristol are also welcome to take part in lessons and activities in the school room. The aim is to enable the continuity of education for children whilst they are in Hospital. For more information please see our website. 

Will my child need to use a standing frame?
In addition to your therapy sessions, your child will need to use a standing frame for an hour each day. This gives them a prolonged stretch of their hips, knees and ankles. We will show you how to safely transfer your child in and out of the frame. Our standing frame come on wheels and therefore your child is free to explore the public areas of the hospitals when they are in it.   The school room and play rooms are only accessible whilst your child is an inpatient at the hospital.In between your therapy sessions you are welcome to remain in the hospital in the public areas e.g. the cafeterias, ground floor reception area. You are also free to return to your hotel if you wish to.

What should I bring with me?

  • Wheelchair - your child will require a wheelchair even if they do not normally use one. Let us and your local Physio's know as soon as possible if your child does not currently have a wheelchair. If you do not have one available to you, we may be able to loan one for use during your inpatient and rehabilitation phase, however you will need one to help get your child home following their rehab.
  • Gaiters - if you have your own pair then please bring them into hospital with you.
  • The walking aids that your child normally uses e.g. walker, sticks or crutches.
  • Favourite toys
  • If you have a tablet or portable DVD player it is useful for keeping your child entertained during bed rest and in between therapy sessions/in the evenings. Lots of parents have found bringing a swan neck gadget holder useful for fixing the tablet to the bed in a good position for their child.
  • Long socks to wear with splints.
  • Loose fitting, cool and comfy clothes. It can be warm on the ward and during physio sessions so consider shorts and T-shirts.
  • Your child's current footwear is unlikely to fit their new splints but is worth bringing with you in case it does. We recommend waiting till you get your new splints before buying any new footwear that they will fit in. There are lots of shops within walking distance of the hospital. There are plaster shoes that you can borrow to wear over splints until you have a chance to purchase your own
  • Hot drinks are required to be in cups with a lid on the ward so remember to bring a reusable cup for tea/coffee for yourself!

What the hospital will provide?

  • Gaiters (if you do not have them)
  • Standing frame for use during rehabilitation at the hospital.
  • AFO splints
  • A walker for use during rehabilitation at the hospital (if your child doesn't have one).

Where can we eat meals?
There is a parent kitchen which you can use when your child is on the ward with a fridge for storing food and a microwave. Some parents choose to bring a travel fridge for use when staying at the hotel so that they can have basic meals in the room. Don't forget plates and cutlery! Sandwich spreads that don't need to be refrigerated are handy!
There is a café on the ground floor of the Children's Hospital. The Café in the BRI Hospital next to the Children's Hospital, has lovely views over the City and you can eat a picnic in there. Costa, WH Smith, M&S and Boots are all located in the BRI. Locally within walking distance of the hospital are a Tesco Local, Sainsburys and Greggs together with a wide range of cafés and restaurants. Bristol is a hilly city so it can be tiring when pushing a wheelchair. There are also a wide range of Deliveroo and Just Eat options available, and Domino's also deliver. Go on line to check for discount vouchers - Beefeater (connected to Premier Inn Lewins Mead) often have vouchers.

Which hotel will we stay at?
Following discharge from hospital after the first week, we are able to provide hotel accommodation, should you require it, for the remainder of your child's rehabilitation while they are attending the hospital as an outpatient for physiotherapy.  Where possible you will be provided with a family room, which will contain sleeping accommodation for two adults and your child.  This is accommodation only and does not include meals or additional services such as laundry or Wi-Fi. 
Paula, our SDR Coordinator will book you into the nearest Premier Inn to the hospital that has availability. Lewins Mead is the preferred option. If they do not have availability during the dates required, you may find that your accommodation is further afield.  We will always try and book the closest hotels in the first instance but this is not always possible and families are required to provide their own transport to and from the Hospital. Paula will discuss this with you once the reservation is confirmed. Try asking for a late check out on your last day to make packing the car easier.

Where can I park my car?
A disabled badge allows you to park for free in any hospital space whether a designated disabled bay or not however Hospital parking is limited. A weekly car parking pass costs £3.40. This is available from the ward whilst your child is an inpatient and from the Main Reception desk or LIAISE office in the ground floor reception area when you are staying at the hotel. If you have a blue badge, Lower Maudlin Street which runs down past the Eye hospital to Lewins Mead Hotel has a number of bays where you can park using a blue badge; check carefully as it's not the whole street. Some Premier Inns have drop off facilities for when you leave and arrive, however please check this dependent on which hotel you are booked into.

When can my child shower/bath?
You will need to limit bathing to sponge baths and keep the scar site completely dry for the first 2 weeks. The nurse practitioner will then check your child's wound. If it is healing well you can get it wet from this point. Resuming swimming and hydrotherapy is from 3-4 weeks post surgery date.

What equipment should we buy for rehab at home?
The most important thing is to make Physio as fun and interesting for your child as possible to help keep them motivated. Buying games that they will enjoy and you can incorporate into therapy sessions is often a better use of money than more expensive rehab equipment. Depending on your child's age, sticker reward charts or 'earning' point towards a reward each week can be motivating. For older children having a 'pass' card which they can use once a week when they choose to have an evening off   a therapy session at home can help give your child some control and help improve overall compliance of exercises with you.

Rehab equipment ideas, check with your local therapy team what they might be able to loan you. Lots of families sell items second hand on Facebook etc:

  • Therapy mat
  • Therapy bench - adjustable height
  • Wheelie stool for parents/therapist
  • Gym ball
  • Wobble cushion
  • Target games
  • Balloons/balls/beanbags/skittles
  • Treadmills - these take up a lot of space and are very useful for some, but not all children; talk to your Physio if you are considering buying one.
  • Ijoy - an electronic seat that simulates horse riding and is aimed at increasing core strength. These also take up quite a bit of space and similar activities can be done on a gym ball. 

How much Physiotherapy delivered by a Physiotherapist is recommended in the community following SDR?
In addition to the home exercise program that your child will perform daily with you, the following frequency of sessions with a Physiotherapist are recommended.

GMFCS Level II

  • Hospital discharge to 4 months post-op: 2 times per week
  • 4 to 6 months post-op: once per fortnight
  • 6 to 12 months: once every 3-4 weeks
  • 12-24 months post-op: monthly or as required

GMFCS Level III

  • Hospital discharge to 4 months post-op: 3 times per week
  • 4 to 6 months post-op: once per week
  • 6 to 12 months: once per fortnight
  • 12-24 months post-op: once per 2-4 weeks or as required

What is it like getting back to normal life?
The time in Bristol following SDR surgery can be a bit of a bubble. Getting back to normal life can be emotional for both children and parents. Often there is a natural dip in rehab progress and motivation as you get back into a new routine. Don't worry, this is completely normal. Returning to school after SDR is entirely individual.  Due to tiredness and initial loss of mobility children often start going back on reduced hours.  It may be worth talking to your school and local physiotherapist and planning for this. 
Lots of children have temper tantrums or fluctuating mood. Rehab schedules can be exhausting; talk to your local team about your schedule and make sure to have plenty of rest time where they can 'be a child'. Consider reducing therapy sessions in line with normal school holidays for half terms, Christmas and Easter breaks. Continuing with stretching and therapeutic activities such as swimming and horse riding, but taking a break from Physio led sessions during these weeks will allow for essential rest time for your child.