PATIENTS WITH RARER CANCERS

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1 Greater Manchester and Cheshire Lancashire and South Cumbria Merseyside and Cheshire PATIENTS WITH RARER CANCERS Listening Event Report, 12 FEBRUARY 2010 In those few hours I think I understood more of the patient experience and what matters to patients than in all of the formal routes. Martin Stanley, North West Specialised Commissioning Team The three North West Cancer Networks held a rarer cancers listening event aimed at capturing the experiences of those patients, carers and relatives affected by a rare cancer. The three Cancer Networks are: Greater Manchester and Cheshire Cancer Network (GMCCN) Lancashire and South Cumbria Cancer Network (LSCCN) Merseyside and Cheshire Cancer Network (MCCN). For the purposes of this event, rare cancers were defined as those other than breast, lung, prostate, and bowel (colorectal) cancers. Those with mesothelioma, or with any secondary cancer regardless of primary, were also included within the definition. Development and rationale This event grew out of a meeting of the chairs of the three Networks Partnership Groups, plus the Vice-Chair of the GMCCN Partnership Group, and the three Networks Partnership Group Facilitators. At that meeting Carol Jones, Chair of the GMCCN Patient User Partnership group suggested that a project or activity focused on rarer cancers might prove beneficial. The idea of an event was strongly supported by the other Partnership Group representatives and Facilitators at the meeting. It was suggested that an event aimed at those patients with rarer cancers might uncover interesting and informative aspects of the existing experience of services and the needs of this group. This partly stemmed from a recognition that the four most common cancers account for some 47% of all cancer patients, while the remaining cancers account for the other 53% of all cancers. However, no single tumour site outside breast, lung, prostate and bowel cancers accounts for more than 5% of all cancers, with most accounting for 1% or less of all cancers. Page 1 of 24

2 Audience From the outset it was agreed by the Facilitators and the Partnership Group representatives that the event should focus on exploring the needs of patients and carers affected by rarer cancers. The event would offer the opportunity for patients and carers to be heard, rather than being talked to. It was also felt to be important that the event sought to access views from a wider group of patients and carers than just those already engaged with Partnership Groups. Finally, it was agreed that inputs from healthcare professionals would be minimised. Invitations were issued to, amongst others, existing members of Network and local Partnership Groups, local support groups run by patients and/or health professionals, national support groups with a local presence in the North West, and existing and new patients. The right was reserved to limit the number of attendees from any given support group or organisation, in order to avoid the domination of discussions by those affected by a particular tumour. Fortunately, this right did not need to be enforced. Attendees were also drawn from a small number of national cancer charities, local healthcare professionals with expertise in rarer cancers or in information provision, and representatives from the North West Specialised Commissioning Team. Paula Lloyd, Associate Director at the National Cancer Action Team (NCAT) and the national lead on patient information, also attended at our request. Those present at the event included almost 50 patients and carers from across the whole North West, representing a wide variety of tumour types, together with some 20 healthcare professionals, charity representatives and other invited attendees. Format It was felt to be important that the event was structured in such a way as to allow patients and carers to have their say about the issues which were important to them. In order to give the event structure and to avoid special interests dominating the discussion, it was agreed that the event would not discuss the issue of the provision of drugs for specific cancers and that themed discussions would feature during the event. Initial suggestions were that those themes might include: Information for patients and carers with rarer cancers Support available for those with rarer cancers Communications to, and for, those with rarer cancers Transport issues The impact of the geographic organisation of services ( service configuration ) on those with rarer cancers. Page 2 of 24

3 Registrants were asked to indicate their preferences from these choices, and to suggest any other areas which they felt might be beneficial to discuss. From completed registrations it became obvious that responses were suggesting that the Transport and Geographic organisation / service configuration sessions could be amalgamated. It was also felt that the small number of additional suggestions made by registrants could be included within the remaining four themes ( Information, Support, Communication, and The impact of service configuration on those with rarer cancers ). The themed discussions were each facilitated at tables by a member of one of the Cancer Networks with a brief to ensure that all participants were able to input fully and that no single person or issue was allowed to dominate the discussions. Registrants were allocated to tables to mix-and-match tumour types and the Networks from which they came, although joint patient / carer attendees were kept together. Attendees were rotated to new tables after the first two sessions in order to keep discussions fresh, and to let people mix and share thoughts. Following each session, all comments were recorded and the top three issues from each table fed back (verbally) to all participants. Attendees were also given the opportunity to feed in any comments (via a comments sheet) if they preferred not to make them openly at the tables or which they felt had not been effectively captured at the table discussion. Funding for the event was kindly provided by Macmillan Cancer Support, through their Cancer Network Partnership Group grants programme. Key findings Key insights from the day can be summarised as follows: Information Those affected by rarer cancers had a considerably more limited choice of information materials available for them than those affected by the more common cancers In many cases information materials were old, and there was concern that older material might be less accurate or take no account of recent changes in practice Some patients had no information provided at all about their particular cancer. This was not exclusively the very rare tumours uncommon variants of some relatively common cancers (a specific example noted was testicular cancer) were not mentioned at all in the general information material about those tumours, other than to note that the conditions were very rare The absence of information meant that some patients and carers were reliant on the internet for help and advice; this was recognised to have pitfalls. There was a desire for verified, NHS-approved material that could be easily accessed by all There was an issue about the consistency of the availability of information in general those Trusts with an information centre were perceived as offering a more accessible Page 3 of 24

4 service with a wider choice of materials than those which did not have an information centre. [Note: It is important to recognise that this is the perception we acknowledge that it may not be borne out in practice] The format of any information material was not, in general, felt to be an issue. Those affected by rarer cancers felt that any information, regardless of the format in which it was made available (booklet, leaflet, print-out), was preferable to no information There was a concern that some information provision might move exclusively to the web noting that approximately one-third of the UK do not have access to a home computer Written information alone was not the answer to the needs of patients. Linked to the support debate below, it was felt to be very important that patients and carers were not overloaded with written information at diagnosis (where often they were unable to absorb anything other than the fact of a diagnosis of cancer) but that they were given the option of material tailored for them at the appropriate stage of their journey, when they felt able to absorb it A significant percentage of the information which was felt to be needed was not specific to a patient s tumour there was a desire for general information such as sources of benefits advice, information about transport and parking charges (and local sources of help / support with these), and information about psychological support. Patients and carers also felt that there was, in general, little information about access to support services (covered in more detail in the support section below) Information, where available, was generally felt to be aimed at the patient, with little or no information available for carers Attendees felt that in many cases their knowledge of the rarer tumour became greater than that of the majority of the health professionals with whom they dealt. This was seen as a particular issue for GPs, who many patients relied on for the control of pain and other side-effects after treatment Where information did exist, there were views that some of it had been written by clinical staff for clinical staff. Too much knowledge was assumed by some material for it to be of practical use for patients and carers. A key example given was of material which assumed an expert knowledge of anatomy patients and carers admitted that they did not know where the relevant organ was in their body. Support Support available for those with rarer cancers was felt to be limited compared to that available to the more common cancers. This was in part due to the limited availability of Clinical Nurse Specialists (CNS) or key workers, and in particular the limited availability of those with a detailed knowledge of a particular tumour Page 4 of 24

5 Where patients were given a CNS or key worker, there was a positive reaction for the general support which they were able to offer but patients and carers felt that they were missing the detailed support which would be available from a dedicated CNS/key worker with specialised knowledge. It was not felt that this necessarily had to be delivered face-to-face Access to, and advice about, support groups was felt to be lacking. Specific comments were made about how empowering and helpful it was to be able to talk to someone who had had the same experience. But there seemed to be a lack of knowledge about, or direction to, local support groups whether run by, affiliated with, or independent from the NHS. This had led some participants to set up their own support groups. Even in these cases, patients and carers were not being referred to these groups. [Note: this point may reflect the large percentage of attendees sourced through support groups] Support was felt to be needed at all stages of the patient journey. Many attendees noted that support was offered at the point of diagnosis when many felt least able to absorb it or to know what support they should be seeking but that there was little support available on an ongoing basis Psychological support was identified as a clear gap in service provision across the whole North West. The ongoing effects of a rarer cancer and its treatment were felt to need significant psychological support but there was little if any evidence that this was provided in a systematic way (and in some cases not available at all). Impact of service configuration There was a widespread recognition of, and support for, the need for the development of centres of excellence to treat rarer cancers However, it was felt that particularly for those from those parts of the North West furthest from the Manchester / Liverpool centres that the impact of the way that services were organised was underestimated Travel times were felt to be a serious issue for those coming for treatment from the furthest parts of the North West (e.g. Barrow, Cheshire). This was particularly accentuated when the appointment itself was either short or not linked to other appointments which might be carried out at the same time. Multiple journeys were particularly problematic where telephone consultations or follow-ups might be substituted though it was recognised that this would need to be agreed with the patient in advance Linked to the issue of information provision, there were experiences of information on a specific cancer only being provided at the centre of excellence rather than at the patient s local hospital potentially entailing a long journey to source an item of information Page 5 of 24

6 Service provision did not seem to be well joined-up between Trusts patient notes were often not available even for long-established appointments which had required a long journey. There was similarly concern that the results of tests carried out at a local hospital did not seem to be available at the treatment centre, entailing repeat tests, additional costs, and longer patient / carer appointments. This was seen as wasting both patient and professionals time. Communication Attendees noted that they felt that effective communication was lacking for those with rarer cancers. Specialists in rarer tumours might not have as much opportunity to communicate directly with patients and carers and their communications skills might not therefore be as advanced. Similarly, given the shortage, noted above, of dedicated CNSs and key workers for those with rarer cancers, communication skills specifically about the rare cancer were sometimes lacking There was a desire from those who were aware of the Advanced Communication Skills Training (ACST) programme to embed this more widely and make it compulsory for all, in order to enhance communication skills across a wider variety of healthcare staff GPs were seen as a critical part of the communication pathway as many patients did not have access to other, more specialised sources of advice. However, there was felt to be a lack of knowledge on the part of GPs about the rarer cancers [Note: given the number of cases of rarer cancers which a GP will see in a year this is not surprising, but it does point to the need for better communication and information pathways] A complete listing of all recorded comments from the day can be found at Appendix A. Issues for exploration and action A number of issues arose where some limited interventions from the NHS could have significant benefits to patients: Information needs to be provided at the point of patient need, not at the point of convenience for the NHS. This is particularly acute where patients are treated at a Network or regional centre of excellence but live a considerable distance away, and find that specific information for them is only available at the centre. This could be addressed in a number of ways: o Greater use of on-line information, coupled with greater support from local Trusts for those unable to access the internet directly (e.g. via information centres and libraries). This has synergies with the developing national Information Prescriptions Initiative Page 6 of 24

7 o Clearer communication between healthcare providers at all stages of the patient pathway, with local services able to access and provide relevant information locally (either from an on-line source, or by ordering from a stock held either centrally or at the main treatment centre) o Auditing the information available at each Trust in the North West for each rarer cancer, in order to establish a baseline for the information which should be available. This would help to avoid what could be seen as a postcode lottery of information provision Support the NCAT s ongoing work developing NHS-branded, verified and trustworthy information material on rarer tumours. This work might include: o Sharing Trust-developed material for adaption into NCAT material, for wider use across the region o Committing to use, or to direct patients to, NHS-branded material developed by NCAT where no alternative exists. Where appropriate this should be linked to the ongoing roll-out of the Patient Information Initiative o Exploring in more detail the views of patients about the provision of information in a variety of formats. There is a widespread perception that patients will want to receive information in written format, via high-quality (and high cost) booklets. This event did not appear to support that position. An open and impartial survey of patients might produce interesting alternatives. Any move away from written information must, however, support the needs of those people who do not have internet access directly o Encouraging the further engagement of patients, carers and support groups with NCAT in the development of new information materials on rarer cancers. This might also support the patient and carer review of all material to ensure that it can be understood by the lay reader. This North West event has already identified a number of people keen to be involved in this process Exploring the prospects for a North West-wide register of sources of expertise in rarer tumours. This might include: o Auditing where CNS / key workers with expertise in rarer tumours are currently based o Exploring the options for their details to be made available to all patients with that specific rare tumour, potentially to support non-face-to-face support services on an appointment basis which could be booked in advance. This remote clinic might only need to be offered infrequently, and on specified days, but would help to meet the needs of those with rarer cancers. It would, of course, require cooperation between Trusts as CNS / key workers with particular skills or areas of expertise might be seen to be offering support to patients with no direct contact to a given Trust. There may be tariff implications here. However, it seems unlikely that there would be a position where a Trust Page 7 of 24

8 was receiving services from others for its patients without offering at least some CNS / key worker support services elsewhere. Considering ways in which a national, regional and local register of support groups could be maintained and promoted more widely to newly-diagnosed and treated patients. A variant of this was a feature of Peer Review until 2009 but was widely not adhered to, given the requirement to verify services which was felt to be impractical. o A simpler system, noting the existence and contact details of support groups but noting that the NHS cannot endorse particular groups may be a solution here the GMCCN website includes wording introducing its listing of support groups which notes that The Greater Manchester and Cheshire Cancer Network does not endorse any particular groups, and anyone looking for a support group is advised to find out more about the group, including who runs it, what it offers and what its aims are. o There needs to be an improved mechanism for access to a local / regional register of support groups by Trusts, CNSs, and key workers, and a better mechanism for ensuring that this information is made available to patients. A selection of national cancer support groups are already listed on the NHS Choices website; improved links with existing local support groups might allow for their details to be hosted here as well in order to provide a single source for Trusts to direct patients and carers to. The NCAT may be able to facilitate taking this forward. The provision of and access to psychological support services (at all levels of expertise) needs to be explored further. Not all patients and carers affected by rarer cancer will need high-level psychological support but improved access to those able to provide levels 1 and 2 psychological support, and further training for staff to deliver support at this level, would help to meet needs here. Providing this form of early and appropriate intervention should also help reduce the numbers of people needing level 3 or 4 support Dialogue needs to be continued between the Trusts, PCTs, Cancer Networks, Commissioners and those affected by rarer cancers about the gaps in service provision which are identified. As this event demonstrated, there are considerable similarities between the needs of patients with rarer cancers and those with more common cancers. But the significantly smaller numbers of people affected by any individual rarer cancer means that they have a less effective voice, and their views may not be adequately reflected in ongoing surveys or feedback to commissioners, as identifying patients affected by rarer cancers can be difficult. Continued dialogue should enable the NHS to understand better what existing services need to be better targeted to ensure that those affected by rarer cancers continue to benefit from them. Page 8 of 24

9 Treatment pathways for those affected by rare cancers need to be considered carefully to minimise both the number of lengthy journeys needed and the length of appointments. While there was widespread recognition of the logic underlying regional and local centres of excellence, better preparation by medical teams when scheduling appointments for those travelling long distances should mean that notes are in place and tests only carried out where necessary. A mechanism to identify early in the process when patients would prefer to have contact by phone, where practical, should also be explored, to encourage smarter and more cost-effective working practices. Communication skills for those dealing with patients and carers dealing with peoples affected by rarer cancers are critical. Extending support for existing training such as the ACST programme would be welcomed, as would a commitment to making training in communication skills mandatory for all. Any mechanisms which might help raise GP awareness of signs and symptoms of rarer cancers and minimise the chances of referrals for cancer tests not being made would be welcome. However, given the very small number of rarer cancers which a GP will see in a year, it is recognised that it will be difficult to address this issue effectively. Some initiatives are already in place such as Map of Medicine but it is not clear how widely these are being used by practices. National event Building on the outcomes from this event, Paula Lloyd from the NCAT offered to organise and run a national, NCAT-funded event to look at the issues which are important to those affected by rarer cancers. This should provide the opportunity to: Widen the evidence base to support the issues identified above Broaden the scope of those patients and carers affected by rarer cancers who are engaged with Networks, commissioners and NCAT Deepen our understanding of how Trusts and Networks might organise services differently to help address the concerns identified Page 9 of 24

10 APPENDIX A DETAILED FEEDBACK AND COMMENTS (note that some comments were duplicated across tables) Support Support Groups meet lots of peoples needs but these needs are not always the same Employees are important, they are not always supportive and the impact on carers can be devastating Schools and education important in the support of children with cancer Consistent specialised services Signposted towards areas of excellent support Better understanding of pathway Direction to appropriate support from NHS Key worker / support nurse essential Holistic assessment not tick box Communication signpost to information prescription Types of support more aware Access to CNS important Consistent specialised services Signposted towards areas of excellent support that exist Slicker pathway sharing with GP at Multi-Disciplinary Team (MDT). Better understanding of pathway Private route no CNS support. Thymus linked with lung cancer Maybe less knowledge of rarer cancers no identified person Presents as late cancer because not misdiagnosed Rarer cancers: referred from Lancaster to Oxford. Felt like being off the radar. Number of hospitals visited = 10. Some for diagnosis, others for treatment Lack of someone who knew what it was including general public. No information available Carer needed someone to talk to. Questions / context / what to look out for Need someone to point you towards the information. No local support groups National key worker role. Labelling makes other groups exclusive. Links to Rarer Cancers Forum Response times for support after acute treatment phases, what about survivorship? Page 10 of 24

11 Research trials Specialist centre Key worker / research nurses / support group / buddying Doctors and Nurses do not give this information No CNS = postcode lottery Lumped together with larger cancer tumour groups Before event signs and symptoms at GP level & public and hospitals Emotional and psychological support for rarer cancers Targeted information possibly via EMIS (an electronic information system) Seeing the same doctor who knows you Dignity = communication Shared care CNS = 1:1 at home. Bridge between acute and community Healthcare professional What to eat, travel insurance Lack of information after discharge. Very difficult Out of hours service carer Access to dietician If you ve had extensive surgery lack of support District nurse in to do changes to dressings. Lots of support falls on carer Health care searching by self and atypical Information can help and positivity can help with prognosis and NHS so good when in system fall off conveyer belt failed by others. As long as patients know where to go responsible need to take control of body End of treatment pilot in Blackpool Worry that sometimes healthcare professionals will put up poster to advocate Importance of supported information giving Perception of hospices As healthcare professionals trying to link in to hospices earlier so link is there There is still a Doctor knows best scenario often times where people want to ask question but healthcare professional away. Be involved in treatment Page 11 of 24

12 Confusion about who to ask for support feeling isolated lack of proper info. Moving across from audit to childrens Out of Office service delay Difficult to support the patient when they don t want to know Managing peoples distress Many people want to know what to expect planning Carers need to know as much as patient carers can access organisations to support patients Head & Neck group key worker protocol. Follow up through treatment and follow up if they can t support them know who to signpost to Co-ordinator role Drop in centre easy Psychological support Non-lung Mesothelioma support Direction / referrals for clinicians for rarer mesothelioma Key worker timing and contact info / expectation for rarer cancers Information for unusual rare cancers Psychological support availability Access Support nurse availability / capacity Chemo support at weekend Routes Support for welfare benefits etc. Practical support Blue badge scheme (impossible to get temporary badges) Initial good direction Transferrability of best practice from common cancers Generic information vs specific tumour Do people get tumour specific from consultant? No Information is not support Match resources to need availability of beds Should be NHS direction to support groups signposting Page 12 of 24

13 Key worker is critical but may have several if rarer cancer Appropriateness of GP as key worker Key worker after diagnosis Chance to discuss diagnosis 2-3 days after being given Holistic assessment Signposting Post treatment care Dedicated CNS Better understanding of care pathways Local information on very rare cancers Rarer cancer patients don t access support services because centres are too far way Promoting what is available Information to take home Isolated support groups needed No support after treatment Directory gas/electric tariff cheaper Key worker dedicated support Carers important too! Holistic assessment must be done to let patient and carer explore their own needs. Support in schools for children with cancer? Lack of support at end of treatment Bridge between acute and community services Signposting Don t forget about siblings Information Information given should be clear, concise and up to date. Basic knowledge of what is out there finance / blue badge Talking book CD Information tailored for the individual. Generic pamphlets don t always work for rarer cancers Page 13 of 24

14 It s ok for staff to say I don t know but I ll find out rather than giving only a partial or unhelpful answer There is very little information about rarer cancers. More work should be done nationally, starting with rarer cancers not the common ones. Patients should be involved in producing it Patient information centres and libraries, where information is personalised, really important for rarer cancer patients Central base for people with rarer cancers access and contribute Paediatricians should have more information to give to parents Knowing who to contact after diagnosis key worker Voluntary support groups opportunity to chat to other patients and carers with similar experiences Chance to discuss diagnosis again two or three days after being told time to sink in Simple and accessible Timing patient empowerment High quality and verified source not important. Partnership Timely diagnosis, GP sufficient information. Where to find information on rarer cancers Very little information. Consultant gives diagnosis then patient left alone for 30 minutes. Some information given over telephone by Macmillan Nurse but made things worse. Macmillan Nurse talked about staging Would have been nice for someone to ask what patient wants to know Piecemeal. Hit crisis and ask then get information which isn t comprehensive Insurance company wants to know what to expect Language used makes understanding difficult Told in 1997 this is what will happen. Relapsed in 2006 told what treatment plan was. Difficult to get head around as patient now needs to agree what happens rather than first time through accepting what told Seeking second opinions perhaps might be something more on radar Body aware need to be pro-active and seek help Carers don t want to make a fuss Difficult needs of patients as they have different needs / expectations Diagrams would be useful rather than complex medical language No jargon, or glossary if necessary Appropriate at right times Page 14 of 24

15 Tape consultations Web scary Bits of information at a time relevant to current situation Checking in with you over time can go back to key worker Information specifically for carers / patients Named key worker with whom patients can re-visit information over time if necessary Just a book having information explained to you Clear and up to date Too many medics vs not enough patients in developing materials Publicity Getting information out there and adopted Timing of information provision Patient in control of what, when and where they get Co-ordination of information on rare cancers How soon in advance do you get notice of treatment Opportunity for patients to seek information Simple initially Specific to individual work with patient in right language Think about effects of what is written (15% survival!) Percentage don t use internet Too much knowledge assumed, e.g. anatomy Delay between diagnosis and information / discussion good/bad? Information for medics Little available in user friendly language Cancer backup doesn t have enough information in patient language. Need more adequate information for rarer cancers. Lots on common cancers Accessibility electronic / hard copy / verbal / reference Information should be standard across the NHS. What does GP know about these rarer cancers? Symptom database? Diagnostic evaluation. Need to make it easier for generalists to diagnose correctly. Sets of symptoms may help earlier diagnosis. Is this available for other diagnostic groups? Clear, concise, up to date information Page 15 of 24

16 Talking book for patients who have communication difficulties High quality and verified Simple and positive! Information for carers Patient to be involved more for specific input into information materials the patient is quite often the expert in rarer cancers Diagnosis and simplified /understandable information Information given in right setting Check out that information has been understood Very little information what is available should be centralised and available to everyone A patient pack including information on welfare benefits should be available at diagnosis Not always given information on options available Consistent information Service Configuration Communications between trusts Explanation of duplication of tests / need to fill in background Improve satellite clinics to minimise patient transport See the same people each time you visit the regional centre Key worker vital when moving between organisations Support groups can help patients access financial / benefits support GPs need to know where the specialist teams are PCT paperwork required to approve out of area treatments worrying time for patients Key worker known to patient & professionals to help with continuity Travelling for treatment financial implication for family & patient. Need local information and support. Don t forget siblings and other family members Have a link person to support patient / carer when they have to go longer distances for treatment. Could be a volunteer / buddy Travel costs should not be means tested Centres of excellence good idea as long as support services are available Needs of patients above those of hospitals Process needs speeding up Page 16 of 24

17 Very defined pathway (with MDTs) especially post operation Time of appointment should be appropriate and take account of patient s travelling time Consistency in care patients should be in appropriate wards / hospitals Accommodation should be available for parents and carers Thought give to off label drugs Distance between hospitals difficult by public transport. Could Greater Manchester ring and ride service be extended to include hospitals Restricted visiting times difficult when relying on public transport Should have agreed protocols could help with balance of distance vs local services. Shared or patient held notes Core contact for patient / carer when treatment moves Consistency of message between trusts Whose responsibility? Isolation for patients physically for certain patients (radioactive treatment). What provision? Support for claustrophobia? Pre-visit to re-assure? Information in advance / explanation of why things are done Communication and transfer of information Why duplication of tests etc between hospitals? Need to avoid having to repeat story each time More use of satellite clinics Explain in understandable simple language Limited number of labs doing test results = longer delays not explained Transport especially when regular visit / public transport information about alternatives Distance between hospitals public transport means 4-6 week stay Restricted visiting times offer no flexibility for bus times. Could GM ring & ride service be extended? Poor provision for overnight stays in Pendlebury but may be better in new children s hospital Elderly people living on their own. Not supported by responsive, timely ambulance service Rights of next of kin and family Shared care needs to be better. Agreed protocols Patient having control of their own notes Feeling of being pushed from pillar to post What if no relatives? NHS transport which means whole day Page 17 of 24

18 Think about overnight facilities for patient and relatives Thought given to appointment time due to travel Consistency in care right care in right place Overnight accommodation Need to keep support going inter-hospital GP needs to know where expertise is Need to know about clinical trials Financial help for travel and distances Importance for better communication between hospitals Explanation of why things are done Psychological support should be identified and specific would save money in the long term! It seems to be that unless a procedure / therapy service etc. is not part of a target, or if there isn t a box to tick it will be impossible to get it done. Even as a member of staff it is infuriating that these things are always low priority Patient choice regarding treatment should be able to opt to be treated at Centre of Excellence Loss of personal touch Services to be increased in Centres of Excellence. Model enough beds, CNS to accommodate larger people Better transport co-ordination. Centres of Excellence really inflexible therefore long days Lack of co-ordination of care Isolation when having to travel long distances for treatment Have a link person when going to different hospitals could be a volunteer, buddy a friendly face Financial implications Nobody told me anything would rather be told everything it makes you feel very vulnerable In a centre of excellence the patient should also be given the choice of having their chemotherapy at the centre of excellence if that s what they want, instead of automatically being shipped back to their nearest hospital for treatment Page 18 of 24

19 Communication More places for communication training but training for all who come into contact with patients / carers, consultants to cleaners Lack of knowledge of the cancer might impair communications. Professionals afraid to say I don t know but I ll find out. Need the right environment too Highlight good communication and share good practice. Communication is everything Huge role for support groups helping to communicate with family members, buddying, social life Communication is not real communication if words are not understood. Need to check understanding GPs need to know what is going on with a patient s treatment in hospital, not just after it has happened but during treatment too Buddying systems in place with appropriately trained and authorised people Advanced communication skills training course Consultants should take skills back to work place Breaking bad news Trusts have policy. Routine mechanism in place of patients thoughts of receiving news Lack of support and information for rarer cancers Less awareness so cancer often picked up late GP and staff wary of accepting rare cancers and their knowledge of services, symptoms & contacts Information for common types of cancer, rarer cancers get lumped in, nothing separate Impact of other services, e.g. dentists. Are dentists aware of all side effects etc, sharing information Little evidence of peer review of advanced communication skills training Family liaison officer service. Specialist communication in NHS and information specialists such as Macmillan units Letters should never be used as form of communicating bad news should be done in person Support groups succeeding where NHS if failing = statutory Time for nurses etc to talk / communicate Help patient empowerment how to know what questions to ask & help Key worker just as important for carers as for patients Private route and link to care pathway doesn t always link to support services Page 19 of 24

20 Care co-ordinates national role for very rare cancers Local information where to direct people to. Who has it? Support GPs may be international Medical papers available but needs to be translated to user friendly language, that is, for Cancer Back up Accessibility multimedia needs. Could this be a national resource? GP s understanding of rarer cancers. Late diagnosis is not always late presentation. Can algorithms be set up to aid and guide diagnosis? Like being a detective GP practice staff sometimes wary of accepting rare cancers scared! Do not know what to do. Need telephone contact Is information available for GPs Common forms of the rarer cancers but no information about rare, rare cancers. Will information prescription help this? Ones with poorest education / language difficulties have access to benefits Hub and spoke models 1 specialist overseeing area to come and treat locally Centre of Excellence model good if not being driven financially Needs to be an increase in number of beds Psychological support need for more of the level 3 type work from NHS Services need to be more joined up Lack of support service Walk-in centres Multi-faceted patient/consultant, consultant/consultant, making sure people know about services Need to make sure there s time for nurses to talk to patients, not just administer treatments Carers need named person just as much as patients Inclusion of carers in all discussions What info / communications do patients want? Patient led How do patients know what questions to ask empowerment, time to sneak up on the right question Have the opportunity for patient with experience to be there to help support group member but also basics about hospital or direction to another patient with similar experience opposite to talk in isolation without carer / patient there Specific knowledge important not just on own. Ok to say I don t know Page 20 of 24

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